From the time my oldest child, Paige, was born everyone kept telling me, “Just you wait.”
When she made it through the terrible twos without much of a tantrum everyone kept telling me, “Just you wait.”
When she made it through elementary school and a move from NYC without trouble they kept saying, “Just you wait.”

“Just you wait,” they said, “girls are drama. You got lucky before. But the teen years? Oh boy… just you wait.”

Today she prepared me a bowl of soup and brought it up to my bedroom. I was resting after my surgery to remove malignant lymph nodes and tissue for testing yesterday, the room was dark. I invited her to come snuggle with me in the big bed. We’ve never let our children sleep in our bed so they think climbing in is a big treat.

I asked her if she wanted to talk about what was going on, about my news about having metastatic breast cancer. She did.

And so it began: an hour-long talk that started with her first question, “Are you scared?”

She asked questions about genetics and risks of getting cancer to what kind of treatments I might need.
She asked me again, as if to confirm for herself, “It’s not curable, right?”

We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.

I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it’s normal, that sometimes fear makes you brave enough to do things you don’t think you can otherwise do.

I told her that I understood that sickness could be scary, that I didn’t want her to be afraid of me as I got sicker someday. “I would never be afraid of you, Mom. I’m only afraid of cancer,” she said. My heart squeezed and thrashed and the tears flowed.

We talked about her desire to be a doctor, a surgeon. She wanted to know what all of my surgeries and treatments had done. She wanted to know the difference between cancer “stage” and “grade.” We talked about the genetics of breast cancer and discussed the BRCA-1 and 2 genes (which I do not have). We talked about hormones and their role in puberty, menopause, and cancer. She wanted to know why outcomes are so variable. How will we know if treatments are working? I told her about the importance of her monitoring her own health, how hopefully we will have better screenings down the road.

I told her that for now I want her to live her life, for our house to be as normal as it can be for as long as it can be.
I told her she should try to focus on her schoolwork, her sports, and her friends. She told me that I was more important.

I told her that eventually I might need someone to help take care of me. “I will take care of you, Mom. You’ve always taken care of us,” she said.

We talked about her brothers, ages 11 and 6 and how she was going to have to help them. And her dad too. “I’m really good with hospitals and medical things, Mom… I’m just like you.”

She said she liked that I was open about it. That people knew. She thought it was best to be honest and appreciated the offers of support she’d received from friends and adults she knows.

I told her that what we were doing, lying there talking for an hour together about this, was the most important thing we could be doing today. I told her there wasn’t anything more important to me than my family. My job is to help them deal with this. Whatever this is.

I explained that what she needed from me would likely differ from what her brothers need; she is older and each of them would have different needs along the way. It’s my job to figure that out and address it. And my husband’s job now, too. How I take the lead on this will be important.

She asked if that was a lot of pressure, to have so many people reading my words, watching what I was doing. I told her it was. I told her it was my way of trying to help people. The same way that she wants to be a doctor to help others… well, I have always tried to see if I could help in my own way. And the way we talked before about the unknown being what’s scary? Well, my writing here means it’s less mysterious. Knowledge helps. Even if the knowledge is not what you want to hear, knowing is better.

Denial won’t change the course of things, and often makes things worse.

Secrecy is bad. Sharing and supporting are what I champion. And I know that de-mystification is a constant effort. I will continue to teach my children daily. I said I hoped that somewhere in all of this she could see how important science and medicine are in my world. And that if she does decide to be a doctor that is a noble effort. She will make me proud in whatever she does. As will my boys.

The funny thing is how much better I felt after we talked. The conversation was the hardest one I’ve had. The topics are gut-wrenching. But shining the light on them, on this disease, on what happens next, is the only way I know to cope, to help, to keep going.

We talked on and on as I combed my fingers through her long hair. I stroked her smooth, soft cheek. She was giving me strength.

And what I realized about people saying I should just wait because she’s going to eventually act out:

Waiting is a luxury.
Waiting means having time.
And that’s what I want most in this world right now.1

Originally written October, 2012 and slightly edited in October, 2014 [↩]

I make sure my family goes on trips without me now.
It is important that they learn to be without me.
Important that they get time away from here.
Important that they know there can be fun and joy even if I am not with them.

This is what I want.
This is what will be.
It is not easy to be the family of someone who is ill.
I know this is true.
And so I send them away to laugh, to be together, to have fun.
This is what I unselfishly demand.

In April of 2013 we all went to Florida. I didn’t know it would be our last trip together for a while. I could not focus very well. I just knew that life was not the same and it never could be. I had learned about six months earlier that I had metastatic breast cancer. I knew I would never be carefree again. I had intended to stay away from writing for that time, but on this particular day, in this moment, all I could do was realize the agony that was my situation. When I got back to the hotel room I wrote the words that had been in my head.

…………………………………………………

“Floating Away”

I sit on the beach, feel the sand’s angry texture rub my chemo feet in a way I wish it wouldn’t.

I watch my family in the ocean, turquoise and calm and vast.

My husband flips over, face in the water, takes some strokes out to sea.
His movement is graceful, effortless, just as it was the when I met him 22 years ago.

He was a sprinter on the college swim team then,
and while he laughs and says it doesn’t feel effortless anymore,
nor perhaps fast,
it does not matter.

In my mind’s eye he is that young man,
swimming fast,
joking with his team,
coming over to the stands to talk to me while chewing on the strap of his racing goggles.

I fall in love with him again every time I see him swim.

My three children float, bobbing in the ocean water.
I can feel the distance between us, it feels like a lifetime.
It is my family in the ocean floating away from me.

I see the quartet, I watch as an outsider.
I do this a lot lately.
I watch them from afar and think how it will be without me.
A new family unit.
Behind the big black sunglasses my tears stream down.

Suddenly Tristan is running from the water to me, across the sand.
He stands, dripping, face beaming.
“I just wanted to tell you I love you, Mama.”
I take his picture.
I capture the sweetness.
I grab him, hug him, feeling the cold ocean water on him, melding it to my hot skin.
I murmur to him what a sweet boy he is, that he must never lose that.
I send him back to the ocean, away, so I can cry harder.

By the time they return to shore I’ll have myself composed.
But my oldest immediately senses something amiss.
She mouths to me, “Are you okay?” and pantomimes tears rolling down her cheeks.

It seems like you can’t rank anguish. You shouldn’t be able to “out-suffer” someone. How do you quantify misery?

And yet, somehow we do.

“My problems are nowhere near as bad as yours are.”
“I feel terrible complaining to you about it when you are going through so much yourself.”

I hear these types of comments all the time.
I make these types of comments all the time.

Placing ourselves in a hierarchy of pain and suffering serves to ground us; no matter how bad our situation is, there’s comfort in knowing there is always someone who has it worse.

Like being on a really, really long line at the movies or at airport security, as long as there is someone behind you, it somehow seems better.

Hospitals use a pain rating scale: “On a scale of 1 to 10, how bad is your pain?” When our son Colin was in the hospital for 9 days with a ruptured appendix, they asked him to rate his pain. I was intrigued at his difficulty in answering the question. At the time he was 5 years old and didn’t understand what they wanted him to do. Colin didn’t understand the concept of comparing one level of pain to another; His abdomen hurt… that’s all he knew. He used a binary scale to assess his pain: did it hurt or not? As adults we know better: pain is not a yes-or-no question. Rather, there can be levels, ranking, quantification, and comparisons.

These mental exercises are necessary to keep us going through hard times, no matter what type. Before I got cancer, cancer was a “go-to” negative reference point. I mean, how many times had I, and everyone I know, thought or said, “I’ve got health problems, but at least it’s not cancer”?

I had done that a lot.

A benign lump needs to come out? At least it’s not cancer.
A mole needs to be removed? At least it’s not cancer.
My son has hand and neck deformities and a cyst in his spinal column? At least it’s not cancer.

Then one day it was cancer.
So what could I pacify myself with?
At least it’s not terminal.
At least they can remove the body parts the cancer is in.
At least this debilitating treatment will be temporary and I have the possibility of returning to a normal life again.

Then there was the big one: at least it’s happening to me and not my child.

And when I found out that my cancer had metastasized, I could not calm myself with those comforting refrains anymore.

Now it is terminal.
Now they can’t remove the body parts it is in.
Now the debilitating treatments are permanent and I don’t have the possibility of returning to anything close to a normal life again.

I have often said I have hated becoming anyone’s negative reference point. “At least I’m not her” people now often think of me. I always thought that meant they pitied me. I didn’t want that. But now I realize that it is okay for people to be glad they haven’t walked in my shoes– in reality, that’s what I want. I don’t want anyone to be where I have been and where I am; I’d like to be the lightning rod that keeps other people safe. But we all know it doesn’t work like that.

Denial has never worked for me.
Denial doesn’t kill cancer.

I still believe it could be worse.
I know that is true.

And so, for today, I focus on the fact that I’m not the last one on line.
On the really challenging days sometimes that knowledge is all I have.
And on those days, that knowledge is enough.

Grow up faster,
Need me less,
Reach the sky,
Stand up tall.Make time go,
Speed it up,
Get it done,
Don’t look back.Hear my voice,
Feel my embrace,
Know I tried,
Look straight ahead.Keep forging,
Thinking,
Feeling.There is no choice,
This world is all there is,Make it last.Ours will be far shorter a time than it should be:Years compressed into months, days, hours, minutes. It will never be long enough, It simply could never be enough time with you.

Now that all three of our children are at sleep away camp I get asked a lot “what I’m doing with all of my free time” and “what fun things I have planned.” Clearly what people think life is like for me are a bit skewed. I have nothing planned. I can’t travel and haven’t been able to take a trip for over a year. I’ve missed family celebrations, holidays, and get-togethers. I’ve eschewed visits from family and friends because I’m not well enough. What others consider “free time” is recovery from chemotherapy and struggling to do day-to-day functioning including the many medical appointments. Being able to make it out for a coffee date is a thrill and isn’t possible many days. Most of the rest of the time my “free time” is spent in bed fighting nausea or fatigue or pain or other side effects.

For the last few weeks my blood counts were sliding and I couldn’t do anything without huffing and puffing in a much more severe way than usual. I struggled to bend over to pick something off the floor without needing to sit down to catch my breath. My hemoglobin levels had been hovering around 8.2 for months and I pushed through but they dropped to 7.2 and by then it seemed I needed a boost to be functional. Ten days ago I received two units of red cells in a transfusion that because of some problems with the samples and testing and a five hour infusion ended up being a ten hour marathon day. It was so worth it. Red counts came up within days and I felt better starting about 24 hours after receiving the cells and that continued to increase within two to three days. My platelets were also very low at 24 but regenerated on their own (low platelets are a predictable result of this chemo regimen) and I was able to avoid a transfusion of those. This was, by the way, the first time I had ever had a blood transfusion in my life.

I had chemo yesterday: Carboplatin and Gemzar cycle #6 (that means I’ve had 6 infusions of Carboplatin and 11 of Gemzar so far). Starting now, but especially with cycle 7 and every time after that, there is a risk (reported at 27% for round 7, here is an article for anyone interested) of an anaphylactic reaction to the Carboplatin (and the other platinum-based chemotherapies like it). We are being conservative and premedicating with drugs that will hopefully help blunt or avoid this type of reaction altogether. There isn’t any reliable way to predict if it will happen to any individual patient. I did have a reaction to Taxol when I received it in the metastatic setting (after not having a reaction the first time I had 4 cycles of it seven years ago) but that is not a reliable indicator of a reaction to platinum-baed drugs.

It will be time for a scan soon I think, we are watching my tumor markers which have dropped consistently in the last few months which is fantastic but on yesterday’s test just stabilized without a drop. We’ll have to see if this is just stabilization (fine) or if this is the start of the chemo losing its effect. It is unsettling to think about losing another chemo combination that has been working, even though it’s a tough regimen to tolerate.

My voice has returned to almost normal unless I use it on the phone or talk a lot. With the kids gone I really am not talking much. I had an extra five days off chemo because my oncologist was on vacation and that allowed me to get things done I usually don’t have enough rebound time to do. The transfusion timing helped too.

I haven’t been outside much, the humidity and heat have been too oppressive for me, but I am hopeful it will break soon. I do try to make it to the beach once a week to get a change of scenery.

We will get to see the kids this weekend and I can’t wait to hug them and hear all of their stories before they go back. They love camp, always have. They look forward to it year-round and now that they all go it’s great they can share these stories and experiences (they are 15, 12, and 8. Last year the youngest begged to go for a week to try it out. We said yes, knowing his siblings would be there and he would have a blast. Five days in he called in tears, begging to stay. That repeated every week until after a month we said it was time to come home!).

Some may wonder why, at this time, I let them go instead of keeping them home with me. I do it because it’s not about me. It’s about them. It’s something they love. It’s an important routine, tradition (this is the sixth year for the oldest). In my eyes, it’s important that they have a change of scenery, freedom to be kids, get away from the ways my cancer and its chronic treatment limit what I can do, and therefore what they can do. It’s a gift I can give them and I also feel it reassures them that I am doing better than I was a few months ago. This is important.

I love having them away from electronics, away from wondering if asking me to take them somewhere or do something with them will be “too much” or “bothering me” which I know the older ones are always concerned with. I want them to be with friends old and new, having fun with young and energetic counselors, trying new things. There are so many (most/all) physical activities I cannot do with them that they can do there. So many new games to play, achievements, laughs, experiences. I never hesitated when they were ready to sign up last October for this summer. I knew that no matter what, they needed and deserved it. On the left is my favorite photo from camp so far: Tristan getting hooked in to try rock wall climbing for the first time. It makes me laugh every time I look at that facial expression!

That doesn’t mean it’s easy for us to be apart. We are very close. Especially the older kids worry about me I am sure. But I stay in touch by email, will see them on visiting days, and I send them weekly care packages.

But the truth is that separation is good. It’s a selfless act for me to teach them how to to be without me. One of the most important things, in my mind. Coddling them and making them stay home is not what I feel is best for them right now. It is part of our job as parents to teach our children how to be independent, how to solve problems on their own, how to go off in the world without us for whatever reason. I will always want more time with them. It will never be enough for me. But this is my old age. I must teach them as many lessons as I can, while I can, for as long as I can. And that is true for everyone, but of course I have not only the urgency to do it NOW but also I have no idea how long I have and will likely be debilitated in some form until that time comes.

Yes, it’s true no one knows how long they have to live. But those diagnosed with a terminal disease know what is most likely to kill them. And that their time is not just going to be shortened, but consumed daily with the treatment and effects of that disease. It’s not having a normal, healthy life that is relatively good and healthy until a sudden accident happens. It’s just not the same as the general worries of growing older or aches and pains. It’s never-ending. I don’t get to count down how many chemotherapy (or other treatment) sessions until I’m done this time. Being done will mean there is nothing left for me to try. Anyone who has had chemo or radiation or some other type of therapy knows how important it is to have an endpoint, a countdown. Knowing that will never happen (and in fact what you’re really hoping for is a lot of them, because that means you still have options) is one of the mental struggles each week, since it isn’t just spending one day a week getting chemo, it’s how it makes you feel each day after that.

My hair is growing slowly back on this current combo. I know many people mistakenly think this means I’m “better.” I do like that soon I won’t be covering my head and that means I can be more invisible in public. But I also know how many comments I get on the occasions I have done it that people think I am done with chemo or all better. Not all chemotherapies cause hair to come out. My hair will come and go numerous times by the time we are done with this. Its presence or absence only indicates something about which chemo I’m on, not its success or failure.

Someone on Twitter asked for my piece on what to say and how to be a friend to someone who has cancer/serious illness. Here is a link for anyone that missed it and is interested (it’s too long to include the text in this post).

Also, I am including two posts from last year at this time. One on the eve of the kids’ departure for camp and one written while they were away. Of course I was doing even better than I am now, my thoughts were similar, but not as urgent, strong, painful as they have been the last seven months.

I’ll post again with an update if there is anything to report on change in treatment, scan results, etc. For now we stay the course which is not easy, but is the best possible choice of the options I have right now. And that’s the best I can do.

In these last remaining hours before they go and spread their wings again,
Leave this nest,
I miss them already.

I put the dinner pots and pans away.
Wipe the crumbs from the table,
Load the dishwasher,
Play fetch with the dog.

I sit in the garden,
Listen to the wind in the trees,
The birds settling down before nightfall,
As we settle, too.

I tuck them in one last time,
Hear their doors click shut.

One,
Two,
Three.

Tomorrow night there will be no mess to clean,
No yelling upstairs that the TV has been left on again,
No trunks piled high with carefully labeled belongings in the dining room.

I will cry, I know.
Not because I am sad that they are going– no, that gives me great joy.
Children being children.
Forgetting stress at home and doing new and varied things.
I cheer their independence.

I will cry because I know they will always need me somehow and I just wish I could be there for them to outgrow
by choice,
by time,
by age.

I hear the mother bird in the tree calling out.
I don’t know to whom.
I will be like that tomorrow,
calling out,
with no child to hear.

Hi everyone, an update to briefly say hello since my posts are still infrequent. It’s been about three months now since this particular acute metastatic breast cancer episode started. First I was stuck at home in pain with tumors in my spine and hips before and during the holidays. Then I was in the hospital for three weeks at the start of 2014 getting pain under control and having two weeks of radiation. Now I’ve been home for another six weeks since leaving the hospital.

After such a long period of time many people will start to assume you “must be back to normal by now.” Each day they anxiously wait for news that someone “feels better.” It doesn’t work like that all the time, just the way with metastatic cancer you don’t “beat it.” A good day or two may come, but they are often followed by a bad one, or two, or three. Add chemo to the mix and you start to realize the good days are relative and elusive in incurable cancer. Support is always so appreciated as the days, weeks, months go by. It’s friendship for the duration.

There are many situations where isolation may be a real danger including examples of infertility, chronic illness, and grief. Those who must deal with these problems start to feel isolated. Additionally, they may start to actively separate from others when they feel that life is just moving on without them. As time goes on, they may hesitate to talk about their problems because they fear that friends will have grown weary of hearing about it/ still can’t relate to it. More and more, they keep these things to themselves. This leads both to further isolation and also the faulty notion from their friends that the person is “over it.”

The truth is that it’s very hard when difficult situations of all kinds linger. I think we all do better when tough times are brief. Being in one of these situations has shown me the depth to which this is the case.

Today I had to miss Tristan’s Spring music show at school. It broke my heart to tell him I couldn’t attend. They were able to videotape it and I know we will watch it together and have a special time doing that. If it were just one thing it would be different. But as any parent can imagine, saying, “I’m so sorry but I can’t…” again and again for months is difficult. The truth is that if I knew it were temporary it would be easier. But I know that there will be more and more things I can’t do with the kids. And that’s what weighs on me: this thing is part of a whole.

I tried driving last weekend but unfortunately, for now, the verdict is that I am still unable to do more than go to the bus stop at the end of the street if needed. So I continue to be housebound.

I’m working with my doctors to adjust my medications and try to manage the vertigo, sedation and pain. I am using less pain medicine (hooray) but unfortunately I still feel so rotten I sometimes can’t get out of bed and most often can’t go anywhere except to chemo. It is a cruel balance. This weekend I was stuck in bed for three days. It saddens me to lose so much time.

I still long to write here more. I miss the creative part of my brain working the way it used to. I miss poetry and photography and so many things. I will bring them back though! The orchid photo above is one I took in the kitchen this week. My friend Alex brought me lunch and a beautiful potted orchid. I even ordered daffodils with my groceries this week to remind myself of the garden outside and what’s waiting under this snow.

Winter break at school came and went. I know it’s a very busy time for everyone as Spring approaches. It’s hard to see life outside passing me by while I wait for Spring so I can at least get fresh air here at home. It has continued to be cold and wintery over the past few weeks. If you’re able to be outside today doing anything: errands, standing at the bus stop, or waiting the train platform on your way to work: think for a moment what it would feel like not to do any of that for three months. It’s a very long time. Mundane things can be sweet when viewed in a different light.

I am so grateful for the offers of help and meals that continue to come. Let me assure you they are so needed and appreciated. I will have chemo again this week. In two weeks’ time the plan is to do scans to see if there is any visible evidence about whether radiation and chemo have shrunk the cancer.

My daily reminder: Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.

In case you need a bit of beauty I will leave you with one of mine, a good laugh this week from Tristan. With a very serious expression on his face he says to me quietly from the dinner table, “Mom, I have something to tell you and you’re not going to like it. It’s something I learned. I was reading it in a book. But I think you will be upset. The book was about Albert Einstein. It said that for a while he didn’t want to go to school. He didn’t want to learn things in school that they wanted him to learn. He just wanted to learn what he wanted to learn. He stayed home for a while and didn’t go to school. See? I think you would not think that was very good that Albert Einstein didn’t want to go to school.”

I could not have known at that time the path my life would take. I could not have known how my words were reaching into the future, knowingly, achingly.

I originally wrote about Katie Rosman’s book If You Knew Suzy in 2010. The blogpost was written before my diagnosis with metastatic breast cancer but years after my diagnosis of stage II breast cancer. My fears, articulated below, of my cancer returning and taking me from my family have now come true. It is interesting to read my words now through this new life lens.

Katie and I have grown so close since I first wrote about her book, her mother, and their effect on me. Our friendship runs deep. I treasure Katie’s thoughtfulness, her compassion, her devotion to her family, her laugh, and yes, I’ll say it: I am very jealous of her curly hair and ability to do handstands.

………………………..

November is Lung Cancer Awareness Month. Misinformation and stigma are still linked with lung cancer.

I get asked all the time, “Why do you think you got cancer so young the first time? Why do you think it metastasized?” I think people are searching desperately for identifiable reasons so they can feel “safe” from the fate I have (Clearly she must have done something to be seeing it once again, right? That won’t happen to me, right? If I just eat this or drink that it won’t happen to me, right?).

There is one question almost universally asked of those diagnosed with lung cancer: “Smoker?” There are many risk factors for lung cancer that have nothing to do with smoking. In fact, I only learned after having an oophorectomy in 2008 that surgically-induced menopause significantly increases the risk of lung cancer (one paper here).

Yes, current smokers are those most likely to be diagnosed with lung cancer. But there are increasing diagnoses of those who have never smoked and many who stopped decades ago. We need much more research into the spectrum of causes of lung cancer (including radon and asbestos exposure) and effective treatments. The stigma associated with it, however, is a barrier to raising money for research compared with other cancers. It is the deadliest cancer; more than 25% of cancer deaths are from lung cancer (more than from colon, breast, and prostate cancer combined) yet receives only a fraction of research funding.

I wanted to share this post again during Lung Cancer Awareness Month to highlight one life. Writing is powerful. Across time and space, without ever having heard each other’s voices or shaken each other’s hand, I have learned so much from Suzy.

Katie’s mother, Suzy Rosin, died from lung cancer.

……………………….

There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.

If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.

I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died in 2005 from lung cancer. In an attempt to construct a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.

Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, an inspiration, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.

I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.

I fear that what happened to Suzy will happen to me:

my cancer will return.

I will have to leave the ones I love.

I will go “unknown.”

My children and my spouse will have to care for me.

My needs will impinge on their worlds.

The day-to-day caretaking will overshadow my life, and who I was.

I will die before I have done all that I want to do, see all that I want to see.

As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.

Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.

It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way… these are things that are “significant.”

I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that we can die at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?

Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?

Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?

If I don’t do it, who will do it for me?

And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?

[My original blog had] the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:

If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?

What if you die without being truly understood?

Would that be a life wasted?

If you don’t say things for yourself can you count on others to express them for you?

Further, can anyone really know anyone else in her entirety?

After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew her: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly in 2009. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.

Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us. Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.

I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.

I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I had said in years prior that “we don’t need another memoir.” I was wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.

Even when I am alone
I teeter precariously over the right hand side of the bed.
On my left shoulder when I can,
When the pain is bearable,
When I can settle in for the night.

I still approach the precipice
Rather than opt for the safety of the middle place.
I act as if he is there with me
Taking space
And I, trying to make room,
Move to outer orbit,
As if that extra inch or two would matter.

Even on the occasions I am alone
I pretend as if I am not.

I go to places in my mind,
Wondering what it will be like
When that opposite side of the bed is empty
For him
And he teeters precariously near the edge unnecessarily,
Without me there to take up space.

With great sadness I announce that Jen Smith, featured in an interview here less than a month ago, died yesterday (September 28, 2013) at the age of 36 from metastatic breast cancer.

Readers who receive these posts by email may not have had a working video link to see a 2 minute video of Jen and her son that was included with that interview. I am including a link to my original post here so you can either read the post if you missed it, re-read it, or just go to watch the video which appears at the bottom. I promise it is worth two minutes of your time. It makes me smile and cry in equal measure every time I watch it. It also tells the story of how Jen found the tagline “Live Legendary.”

The obituary the family posted appears here and you can read how much Jen accomplished in her too-short life. I wish I had known her longer; I am jealous of her friends and family who did.

Over the past few weeks we texted. Some days I just texted her to tell her I was thinking of her. Some days I would get a reply as to how she was doing. Some days I received no reply. Those were hard days as I worried so much about her, knowing she was about to die. I continued to text her almost daily in the last two weeks even when there was no response. My last text to her said, in part, “I cannot help myself from saying I love you for as many days as you are here to hear it.” When you have stage IV breast cancer you bond quickly with others who have it too. I do not know if she read that message.

Jen and I spent the last few months having very serious conversations about life and death. I wish we could have been two friends talking about other topics instead. But I am gratified that we could talk openly about some of the things were on her mind the most as she reached the end of her life.

My condolences to her friends and family including the light of her life, her sweet son, Corbin.

I don’t remember exactly when Jen Smith (@sinclair319) and I first connected on Twitter but we definitely hit it off: two straight-talkers with metastatic breast cancer, both determined to do what we could to live as long as we could while educating others about the day-to-day reality of living and parenting with a stage 4 diagnosis. Jen had already been doing it for years, and I have always appreciated the guidance she gave when I was diagnosed with metastatic breast cancer in 2012.

Jen and I are direct about our shared goals (she has a son, Corbin, who is 6. He’s about the cutest boy you will ever see. The photo above was taken a few months ago). Some of our goals: be honest about cancer with our children in an age-appropriate way, be public about the reality of parenting with incurable cancer, teach independence and joy to our children and let them know these are important to experience even after we are gone, and finally, to live life to the fullest even while undergoing difficult and often debilitating treatments for the rest of our lives.

The sad reality of metastatic breast cancer is that it kills. In fact, it’s the only kind of breast cancer that can kill.

Jen is now dying. She has entered hospice after being told in late July that no other treatment options were available.

I have few ways to help Jen in her remaining time alive but one way I thought about helping her was to share her story and her spirit with my readers. I asked Jen to answer some questions for me about two weeks ago and she graciously accepted. I know that today she would not be able to spend the time and energy doing this, so I really treasure the words that she has written.

………….

Lisa: First, I want to refer to a line in your book What You Might Not Know. You write that when your friend Erin was dying you panicked. You asked, “Would others feel this same panic when I was dying?” I would like to tell you that right now, in this moment, the answer is yes. We feel the panic. I feel it acutely. And the helplessness.

Jen: The difference was Erin just had palliative surgery to alleviate her neck pain. She was supposed to heal from that, then go on for more treatment. But, during recovery at home, she became short of breath, begged her mom to call 911. By the time they got her to the hospital, they were able to keep her sedated until her husband flew in.

I’ve watched many friends die, and the “shocking” ones like this one (and the one who just went to have a blood transfusion, then had a clot thrown in her lung and kill her) often offer a different kind of grief compared to those who go on hospice and you have “warning” that their life is coming to an end. You can brace for the looming grief.

Lisa: As an introduction, can you please tell readers what your current health is today (August 17, 2013) and why you have entered hospice. Are you currently receiving any treatment? Do you receive palliative care? Most people think of hospice as something for the last week or two of life. If you would, please share what hospice will provide for you now and going forward as you move closer to death. Do you encourage people to get involved with them sooner rather than later?

Jen: After nearly 6 years of treatment for breast cancer, on July 31st, 2013, my doctor said, “I’m sorry, we’re out of options and it’s time to refer you to hospice.”

I’ve watched a lot of friends die from this vile disease. I’ve always thought, “When hospice gets involved, I hope I go quick, in a matter of hours or days.” Now, after being on hospice for over 2 weeks, I have a different perspective. Hospice is all about comfort care…what can be done to make the patient more comfortable? While on hospice you are not allowed to receive any treatment that would be considered actively trying to kill the cancer cells (i.e., chemo). But, hospice often goes hand-in-hand with palliative care which is about relieving the pain and stress from a serious illness.

I have drains in my lungs which drain out the fluid which has built up due to the amount of cancer present. This is palliative care. It isn’t going to stop the cancer from progressing, but it is going to enable to breathe easier. When my lungs are full of fluid (sometimes close to a liter per side) my oxygen intake is pretty minimal. Because of this, my heart has to work harder to pump out that oxygen to my body. With my heart working so hard, my whole body is tired. Being able to drain my lungs takes care of the shortness of breath issue and also gives me a bit more energy since my heart isn’t working as hard.

Right now I meet with hospice weekly. I got to decide the frequency. I’m still fairly independent; I’m not confined to my house or bed. As the disease progresses, I expect that I will meet with hospice more often. Although they only visit once a week, I speak with them almost daily. They are in charge of reordering any of my supplies (i.e. lung drain kits) and refills of medication. It’s great being able to call, tell them what you need, then it magically shows up at my front door. Hospice is like a good friend, not the enemy. I’d highly encourage readers to consider their services as soon as necessary.

In full disclosure, my mom has taken FMLA time and is staying with us (I’m a single mom to a 6 1/2 year old boy). While I’m still independent, I’m able to be that way because my mom is helping with all the behind the scenes stuff. Laundry, groceries, cooking, cleaning, etc. This way I’m able to conserve my energy and use it with my son.

Lisa: You have a beautiful son, Corbin, who is about to start 1st grade. I know when you were first diagnosed with cancer at age 30 and then with metastatic cancer only 3 months after completing your original chemotherapy you set a goal of living to see him enter kindergarten. What does the advent of school mean for you emotionally now that the first goal was achieved?

Jen: Correct, I made the goal of seeing him start kindergarten when he was almost 2. I knew the statistics were against this, but it also gave me a very concrete goal. Of course I had short-term goals along the way, but this was always the ultimate goal.

Last year when I took him to his first day of kindergarten, I was excited, thrilled, and so very thankful that I got to watch him walk in the front doors. This year will be different emotionally.

In early August we learned who his teacher was. We learned his best friend would be in his class in addition to many of his friends from kindergarten. My son, like many his age, thrives on consistency and structure. I am divorced and his father lives in a town about 20 minutes away.

When I was referred to hospice, I decided that I would start my son at the school in his father’s district. I figured it was one less transition he would go through at the time of my death. So next week, when I take him to his first day at his new school, it will be a mixture of emotion. I’m so grateful that I’m able to see him start another year, yet heartbroken that him starting this school will be the first of many, many changes for him.

Lisa: How has your relationship with your physicians changed throughout the last six years with metastatic disease? And now that you have been told you are at the end of your life?

Jen: I’ve had the same primary oncologist who has always been in favor of 2nd opinions. I joke that I’ve become a hospital hussy going for 2nd, 3rd, 4th and even 5th opinions. But, my primary oncologist has always been my “go-to” person. My oncologist has been in practice for 25+ years, so he is good at keeping the doctor/patient relationship boundary, but I’m willing to bet I’ll stick out in his mind, even after I’m gone.

Lisa: What are you are most proud of accomplishing?

Jen: Memories with my son, family, and close friends. The walls of my home are covered with pictures from different vacations, photo shoots, and events. I’m not interested in fine art, I’d rather have those pictures, and those memories adorning my walls instead.

Lisa: What do you want to be your legacy above all, besides Corbin, of course?

Jen: I feel like this is a trick question-ha! My legacy…wow, that’s a big one. I think the biggest thing is I would want people to stop being the victim in their own lives. I’ve met so many people who have the attitude that they are the victim, everyone is out to get them.

I guess I would want my legacy to be for those people to take responsibility and control what they can. Don’t get me wrong, bad things happen to good people…and I’ll NEVER say “cancer is a gift.” It is not. It’s a thief and a murderer, not a gift.

But I’ve used having cancer as an opportunity to do some things in my life that I may never have done (leave my job, take a huge cut in pay, but go with the mindset of being on retirement and do things retired people do, i.e., travel!)

Lisa: I know you are a believer (as I am) in writing your own obituary so that certain words or phrases commonly used in describing the death of someone from cancer would be omitted. What did you feel it was most important to include and what language did you specifically want to avoid?

Jen: Language to avoid: “lost her battle” “was an inspiration and fought” “cancer was a gift”

Mostly though, I wrote my obituary and planned most of my funeral because I saw it as a gift I could give my family. At the time of my passing, when they are numb and filled with grief, I didn’t want them to have to try and remember what awards I’d won, what year I graduated high school, or when I started at a certain job. I saw this as a gift that I could provide them.

Lisa: What song do you feel best describes your life or your outlook?

Jen: I’m stuck on this one…not sure that one describes my life or outlook. There are ones that I want played at my funeral for specific reasons/to bring comfort during that time.

Lisa: You and I have many similar approaches to dealing with our cancers. We were diagnosed originally at a similar time and when we each had a child under one year old (I also had a 3 year old and 7 year old at the time). One thing we differ greatly in, however, is religion. You write in your book that you think God has a plan for you and that you believe in Heaven and seeing others after you die. You write that you “could not have gotten through this” without your faith. As an atheist who believes this life is all there is and never prays for nor believes in miracles, I am wondering if/how your religious beliefs have changed as you have come closer to death.

Jen: I’ve witnessed a miracle and I see him every day. I’ve been more forthcoming in sharing the excruciating infertility experience I went through to get pregnant. There is no way the last cycle should have worked. There were too many variables that were not in our favor. But, a miracle happened, and Corbin is living proof of it.

I was raised Methodist and still attend the same church I attended as a child. While I go to church regularly, I don’t consider myself “religious” because I can’t quote Bible verses/stories. I consider myself as having a “strong faith.” I’ve witnessed too many completely amazing things to believe they were mere coincidences. I’ve met people (on mission trips) who are so financially poor that they live in trailer and use an outhouse, yet they are so rich in life.

I see Heaven as a huge “welcome home” party. I remember reading a quote that says: One day God says, “Enough, come home.” And that felt so comforting. I know that I’ll be reunited with family members, friends who were stolen from this disease, and most importantly, the child I carried but never met on Earth. And, I think that in terms of eternity my family/friends/son will join me in the blink of an eye. My faith, which Corbin has learned has brought great relief during this time. He knows that he will see me again and that I’ll be waiting for him at his “welcome home party.”

Lisa: Are there any decisions about your treatment in the past six years that you regret? That you think were not fully explained? I, for example, had an oophorectomy (as you did, too) but feel the side effects and long term health risks of having that surgery (increased risk of lung cancer, for example) were not fully explained. And, on the flip side are there any treatments you feel were particularly important in extending your life?

Jen: I can’t think of any.

Lisa: What are a few things you think are the most important myths we should debunk right here, right now, about metastatic disease?

Jen: I know society and the media have conditioned us to use the language “battle” against cancer, or in the “fight/war” against cancer. This is something that I’ve never really felt connected to. After all, what am I battling? A rogue cell in my own body, so in essence, I’m fighting myself. The best quote I’ve found that relates to how I feel is when Elizabeth Edwards died in 2010. Her friend said, “Elizabeth did not want people to say she lost her battle with cancer. The battle was about living a good life and that she won.”

The other frustrating thing I run in to is “So-and-so tried XYZ therapy and was stable for 10 years, why haven’t you done that one?” Then I explain that I tried XYZ and had progression in 3 months. I think getting people to truly understand that this is such an individualized disease is key. Just because XYZ works for one person doesn’t mean all people will respond the same way.

And, this is just me, personally, but I hate being referred to as “sick.” I’m not sick; I have a disease called metastatic breast cancer. If I was “sick” that would imply that I’m possibly contagious or that I’ll get better, neither of which are true.

Lisa: Your son has never known a time in his life when you didn’t have cancer. He is very astute and caring and sensitive. He is a joyful boy is not afraid of many of the topics and subjects that many parents try to “shield” their children from.

I know you and I both believe that protecting children by withholding information is not the right thing to do. Age-appropriate information dispensed in small pieces is better. Do you notice that other parents are uncomfortable around you and Corbin for this reason?

Jen: Maybe I’m completely naïve, but I haven’t noticed that other parents are uncomfortable around Corbin and me. More often than not, I’m told, “Thank you for being so open. My aunt/grandma/relative had cancer but we really didn’t know about it until she passed.”

I’ve worked to connect with as many as possible and be as transparent with information as possible. People assume that a bilateral mastectomy means a “great boob job” at the end. I’ve posted pictures of my bilateral mastectomy (without reconstruction) to educate others. I’ve also posted a picture of my scan, so when I say “it’s everywhere” they can see the scan that shows it truly is everywhere. This was an especially powerful message because I look so “healthy” on the outside.

Lisa: I’d like to leave readers with your video which is one of the most beautiful tributes to a loving relationship I’ve seen. I implore readers to spend two minutes of your life seeing Jen and Corbin. They will make you cry and make you smile. If there is anyone who knows how to live legendary, it’s Jen.

Jen, thank you for sharing your precious time with me, and with so many others. I promise you that your enthusiasm for life and your powerful message will live on in the hearts and minds of so many. It is an honor to call you a friend.

I think the only thing I would say that I might disagree with here is that I don’t think it has to always be a one way street. Mom refers to a time when I was helping her with problems she had in her own life. Yes, perhaps it’s important to be aware of when you are asking your child for help or advice. However, if this is the way your relationship is (ours is, for example), then I believe that maintaining some of this dynamic adds to the sense of “normalcy” that may be elusive but also can be comforting to both parties. That is, if I am not in an immediate medical crisis, helping my mother with a problem she is having feels good to me, rewarding, reminiscent of the way things were before. If the street is always one way, that adds to the feelings of separateness between us, a strong reminder that everything is different.

A suggestion we both have is to focus more on parents taking care of themselves, finding ways to cope in a way that is right for them. Certainly parents and children do not always have the same strategies to deal with medical crises. The parent also may need support to deal with his/her grief during this fragile time. Individuals may find help in talking to a therapist or other supportive figure or attending a support group for parents.

There are constant ebbs and flows in the parent/child relationship based on how treatments are going, anxiety about upcoming tests or bloodwork, and the side effects of treatments. It may not always be clear how much the parent needs to be parent at any given time. Open communication is so important. One of the hardest conversations my mother and I had recently was one in which I openly laid out some ways in which she could be more helpful to me now. That conversation led to a wonderful new phase of support. She feels good that she knows better what I need, how to be helpful to me and to my family. I cannot expect her to be a mind-reader, and the ways that I need support change with how my treatments are going. I will be undergoing treatment for the rest of my life, so it’s important that we are as honest and supportive of each other as possible. I know that she has her own challenges in dealing with my diagnosis. She feels good now knowing some of the things she can do that are most helpful. I truly believe that is what makes a parent feel good is to know they are a help, rather than an additional source of stress for their child during this difficult time.

My mother and I both hope that this piece will be an introduction to this topic. There is so much to say about changing relationships during medical crises. Perhaps today’s post will allow you to raise some of these topics with a family member.

……………………………………

Dr. Rita Bonchek writes:

Throughout this blogpost, I repeatedly refer to children. Even though adult in years, they are our children. When they are diagnosed with cancer, the relationship between parent and child will, by necessity, change. I would like to suggest how parents can strengthen the relationship and cope more effectively at this time.

When Lisa completed cancer treatment after her initial diagnosis (double mastectomy and chemotherapy in 2007, oophorectomy in 2008), everyone, including her doctors, believed that there was an infinitesimal chance that the cancer would return: that period of time was in the past and life would move forward. When the cancer returned in the form of an incurable metastasis in 2012, we were all devastated.

Families have one type of relationship when all of its members are healthy and a different type when one member is ill. But cancer isn’t necessarily just being ill for a period of time, recovering and continuing on with life. Cancer can be a life and death everyday concern. So, what happens? The conversations change because references to cancer are screened , levity is uncomfortable because how can one laugh about trivial jokes when something so serious is occurring and discussions that involve long-range planning are avoided since how long will long-range be.

Who we were as parent and child before the diagnosis of cancer is not who we are and become after the devastating news. The prior carefree mutual relationship now shifts from both of the parties interacting and sharing problems and concerns to only focusing all attention and sensitivity towards the child. There is now a one-way street. How could this not be? When one asks the question “Whose needs are being met?” it must only be the one who lives with the cancer. The goal is, as much as possible, to reduce stress and tension between mother and child but, most importantly, within the child.

There are some tensions that occur when a parent offers to help a child with household chores, fixing meals, carrying packages, etc. A child’s snappish response of “I can do it myself” may indicate that to accept the offer is to admit a weakened condition. Or, any offer to help may cause reminders that at some time sooner or later that help will be needed. It may be better just to do the chore without asking as in folding laundry, unloading the dishwasher, making a meal that could be frozen if the gesture is not accepted. It is MOST important that we do not take personally such behaviors as negativity or curtness. There can be mis-directed anger at a parent instead of directed, expressed anger at the overwhelming madness-sadness of the cancer diagnosis.

It can be helpful to establish ground rules. The parent can ask “What CAN I do for you that would be helpful?” “What should I NOT do that might be upsetting to you?” Those of you who read this blog-post will surely have suggestions that all of us, who are trying to function each day as best as possible for ourselves and for our children, can benefit from reading.

From the day of the diagnosis, our worlds have changed irrevocably for the worse and we must adjust. I may sound as if I knew exactly what to do and employed suggestions proffered. Not so. Just ask Lisa. I let her down. I had personal problems during the time after her diagnosis of metastatic breast cancer and I vented and asked for her advice as she was trying so hard to just get by.

I felt only Lisa knew the participants well enough to understand my dilemmas and to help me. Time after time, I apologized, I vowed that I would not involve her again and she forgave me. But once was not enough, even twice was not enough, for me to learn my lesson and to seek help elsewhere. If I had remembered to ask myself “Whose needs were being met?,” I hope I wouldn’t have placed Lisa in that position. Our children may no longer be as available to support us.

When I was in practice as a psychologist who specialized in grief and loss counseling, I tried to help my patients to understand, process and deal with major losses. I often explained to them that denial was an effective coping mechanism if it allowed them to absorb the overwhelming loss little by little, bit by bit. But denial cannot be total and the reality of the situation must at some time be acknowledged. So, although I do recognize the possibilities of breakthroughs in medical science, I do not believe in nor count on miracles.

I will let my thoughts go a certain distance into the future when I must, but I function day by day as a way of living . I choose not to focus on what may occur in the future because it may not occur. What a waste of time and energy that would be. I cannot focus on the possible downturns during the treatment, on any pain or suffering Lisa could be experiencing but is not telling me about.

The reality is that though I can support and comfort her, there is nothing I can do to make her physical and emotional suffering go away. If I indulged in this negativity and worry about Lisa in my everyday life, I would have no life. I try to remember- not always successfully- that worrying benefits no one. If my worrying could provide even a tiny extension of Lisa’s life, I would worry myself sick.

A line in Joyce’s “ Ulysses” states this emphasis on the present: “Hold to the now, the here, through which all future plunges to the past.”

To derive satisfaction from life, Lisa and I agreed that auditing classes at Franklin & Marshall College would distract me with an activity that would challenge me and bring me satisfaction. And so it has. The last thing we want our children to do is to worry about us. Whatever we do for ourselves, we do for them. Find some interest or activity that gets you through each day.

Lisa and I have quite different personalities and behaviors. As her readers know, she is very open in describing her thoughts and feelings. In contrast, I was a very private person. When Lisa first started writing, I was uncomfortable seeing private information about our family being disclosed publicly and shared with people I did and did not know. But, very soon, I began to appreciate the role that Lisa’s writing played and continues to play in her life and the lives of her readers. And so I changed and re-evaluated my stance on privacy. In answer to the question “whose needs were being met?” I substituted my privacy desire for Lisa’s openness. I stand with Lisa to help cancer patients and their loved ones live with cancer and not die from cancer.

Our daughter, Lisa, is an incredible daughter, wife, mother and friend. I cannot and will not imagine living my life without her.

I have my list of things I worry about.
First on my mind in the morning,
Last in my head at night.

And if I pop awake In the middle of the night?
Yes, the list is there too.

Across the aisle from me on the train to New York City last time sat a woman.
At one point on the journey she flipped huge black bug-eye sunglasses from the top of her head down over her eyes, her look now an insect dressed in designer clothes.

She reached in her purse,
grabbed a strand of worry beads and started kneading them.

With a rapid-fire reflexiveness she started moving one bead at a time .
Each only moved about half an inch down the string.
From the worry side to the safe side.

I could hear the rhythmic mantra of the beads again and again and again,
Quieter but still audible over the clickity clack pattern of the train itself.

I wondered what her worries were.
I wondered if she would add mine to hers.
Or trade with me, even.

Sometimes we need to do something with that energy.
For her it was tiny movements, thumb and forefinger
Pinching and sliding ivory beads on a round string.

We have our rituals when things get bleak. Some pray.
I do not.

There is a coping that comes with grief, a way to release the tension that grips us when things are bad.
Some days it does feel like it eats from the inside out.

When you must come to terms with what you fear
and what you dread
and all you want to do is lay down on the floor like a petulant two year old
and kick and scream about the unfairness of it all…
As if the universe gives a damn that life hasn’t been fair to you.

Clearly it doesn’t.

So I do not appeal to the universe to change what is.
I turn to my balms. I turn to research.
I turn to science.
I turn to determination and hope which are the last things I can cling to,
fingertip by fingertip,
like the cat on that iconic poster that says “Hang on, baby.”

Inner strength is sheer will.
My claws are firmly entrenched.
There is no other way to be.

There is no justice.
It’s up to me to come to terms with the weighted side.
That is where I live right now.

And so every day, when I wake up in the pre-dawn hours and contemplate my worry list and
come to terms with the day that is about to dawn,
I gather strength,
summoning it from its slumber.

“Here we go,” I say.
“Let’s do this.”
Another day is here.
I will see another.
Hang on, baby.

I just want to see my son play baseball,
Watch him wave at me when he’s on base.

I just want to take my daughter shopping for makeup,
Applying powder to her porcelain skin.

I just want to read with my youngest one,
Snuggled up in bed together turning pages of a book.

I just want to grow old with my husband,
Continue to share our lives as we have for twenty-two years already now.

I just want to sit in the garden when we are old.
I just want to talk about the good old days.

I don’t want to read about mTOR inhibitors or side effects or months of disease-free progression.
I want to read beach fluff and skim through cheesy magazines.

I want to get a pedicure and have a nap in the chair.
I want choosing the color of my nail polish to be the toughest decision I have to make for a day.

I don’t want to read reports from the ASCO conference or tweets about new research findings.

I just want it to go away.
But it can’t.
It won’t.

I will never know another day of my life without metastatic cancer or chemo or treatment or dread.

But I will search for joy.
I will.

I will do what I can every day to find that joy,
And if I can’t find it I will make it.
This is my pledge,
This is my promise.
For them.

Some days it is hard to do.
Some days fear and sadness are too much.
Some days I do not know how I will do this with grace,
But I will try.

I must make the most of this time:
Helping others, educating, writing.
I know no other way to do this.
But it’s the hardest thing to do.

I cry, I give in to the emotions, but only for a few minutes.
No good can come from that.
I gather strength.
I re-commit.
I go on living.

The bad days will come someday.

But that day is not today.
That time is not now.
And so I am a parent, a wife, a friend, a sister, a daughter, a writer, and everything else I have been until now.
That is who I am.
That is who I will continue to be.

This afternoon I will attend my youngest child’s Field Day. It will be a steamy 93 degrees here and I will join parents as we stand around and chat while we clap for our children and hug their sweaty bodies and remind them to drink lots of water.

It is always in these group events that so many of us feel like outsiders. It is often when surrounded by many people we are most aware of being alone. For me, this has never been more true than during the past 8 months since my diagnosis with stage IV breast cancer.

I return again and again to the desire to escape, the need to flee, the pull toward being somewhere else. The refrain in the new song I am co-writing with Doug Allen is about this need we all have, regardless of the cause, to take moments during the day where we just “check out” for a bit. It says:

I take a trip inside my head,
I don’t know where I go.
Somewhere else,
Anywhere else,
Far from things I know.

There are days when I want to be the ostrich, when I just am so overwhelmed with things that I can’t be on social media, returning emails, or even talking. I just am still. I notice that I rarely read anymore, even television can’t capture my attention. I sit in silence a lot, and when I have the opportunity I write or work on the songs.

I take those trips inside my head.

The pull of educating and informing is too strong to allow me to stay hidden away, though. Social gravity pulls me back. Sharing and documenting fuel me. I take my anger, my sadness, and my grief and I send them out into the world in constructive words and deeds. I can feel powerless and without control in many ways about what is happening to me but I always feel that I can control my reaction to these things. This is my lesson to the people in my life.

There is a scene in the film Children of a Lesser God where William Hurt’s character jumps into a pool to try to experience utter silence the way that his deaf girlfriend does. He wants to know what that feels like. He quickly realizes, however, that this won’t work. He knows when he rises to the surface he will once again hear sound. He can’t live what she lives. He can’t share her loss in that way.

Antoine de Saint-Exupery wrote, “It is such a secret place, the land of tears.” Most mornings I stand in the shower for a while longer than I need to. I listen to the water, I think about the day, I am grateful to have another. I know I will have more days. For those few minutes I take a trip inside my head. I gather my strength, I focus on the work to be done.

I turn off the water, I step out of the enclosure, and I rejoin the world of the living. That’s what I am doing every day: living with metastatic cancer.

My mother, Dr. Rita Bonchek, is a psychologist who specializes in grief and loss. A career discussing death and dying, however, was insufficient preparation for hearing the words, “Mom, I have metastatic breast cancer.”

My mother, on the other hand, is much more private. She would never write a blog the way I do. She didn’t want to share this news with people; she wasn’t ready to talk about it. I respect her decision but that approach doesn’t work for me. Sometimes our different ways of thinking lead to disagreements. Despite our differences we always support each other.

I thought it might be helpful for readers to hear what she has to say about reading my posts. Some of us with cancer choose to be very public with our daily lives but our parents are often forgotten in the discussion. I think the timing of Mother’s Day weekend is perfect to share this piece. I love you, Mom (photo at left: 1970).

…………………………………….

I am Lisa’s proud mother and I have followed her blog from its first day. As her mother, I read her blog from a unique point of view, and I want to share my perspective with you.

Those of you who are reading this blog follow Lisa and her incredible writing. It is her understanding of human behavior, her expression of feelings of her heart and thoughts of her mind that make so many people want another blog from her as soon as the one being read is finished.

Yet, as the mother of this outstanding-in-all-aspects daughter, my reading of Lisa’s blogposts is complicated because each piece contains an extra layer of heart-wrenching pain for me. Lisa’s blog is a precious sharing of her everyday life, of medical explanation and analysis of each and every test result, of measured consideration of her hopes, fears, etc. Parents rarely get the opportunity to get “up close and personal” to this extent with a child. As Lisa’s mother, knowing her innermost thoughts is a gift and a curse.

If you (or anyone else but Lisa) were writing about a life journey with a cancer diagnosis, I could handle reading about the physical assaults on your body and the emotional assaults on your psyche because I would be more objective and not involved in your everyday life. I could read your blog, feel empathy and sorrow for the diagnosis, but step away from it. However, I am enmeshed in Lisa’s writing.

Lisa’s father stopped having the blogposts sent directly to his e-mail because he was often caught unaware with heavy emotional subject matter arriving at inappropriate times. He now accesses the blogposts only when he feels emotionally prepared for whatever he may find.

While this would also be a very reasonable decision for me to make, I have the ambivalent feelings of wanting to be close and share every moment of what Lisa thinks and feels at that moment versus retreating from the declarations of how her life is now and her fears for the future for her and the family – her family and my family.

Lisa and I share the personality trait of always wanting to know the truth so we are as well prepared for the worst as we can be. Lisa and I promised each other that we would never withhold any information to protect each other. The honesty Lisa promised me is the honesty she has promised to all of you, her readers.

On one level, her blog reveals to me everything I want to know, but on another level what I unconsciously don’t want to know. This emotional see-saw of wanting to read it but not wanting to read it is a decision that I must make each time a new blog-post appears in my inbox.

Why is this “to know or not to know” decision so difficult for me? When I read Lisa’s writings, I imagine the sub-text that she does not reveal: how she is managing to keep her family’s lives as “normal” (whatever that means) as possible.

Lisa is, as most mothers are, the hub of her family’s life. When Lisa writes in a blog-post that she was very tired and rested for hours, I know that her closed bedroom door makes every family member who sees that closed door go into overdrive with founded or unfounded concern and fear.

Lisa and I share the goals to make the most of each day and to cherish and to love one another. These are life affirmations within our control when so much of life is out of our control. Share our goals as you and I, Lisa’s readers, benefit from Lisa’s greatest gift to us: who she is and how she lives her life, in sickness and in health.

I sit on the beach, feel the sand’s angry texture rub my chemo feet in a way I wish it wouldn’t.

I watch my family in the ocean, turquoise and calm and vast.

My husband flips over, face in the water, takes some strokes out to sea. His movement is graceful, effortless, just as it was the when I met him 22 years ago.

He was a sprinter on the college team then, and while he laughs and says it doesn’t feel effortless anymore, nor perhaps fast, it does not matter. In my mind’s eye he is that young man, swimming fast, joking with his team, coming over to the stands to talk to me while chewing on the strap of his racing goggles. I fall in love with him again every time I see him swim.

My three children float, bobbing in the ocean water.
I can feel the distance between us, it feels like a lifetime.
It is my family in the ocean floating away from me.

I see the quartet, I watch as an outsider.
I do this a lot lately. I watch them from afar and think how it will be without me. A new family unit. Behind the big black sunglasses my tears stream down.

Suddenly Tristan is running from the water to me, across the sand. He stands, dripping, face beaming. “I just wanted to tell you I love you, Mama.” I take his picture. I capture the sweetness. I grab him, hug him, feeling the cold ocean water on him, melding it to my hot skin. I murmur to him what a sweet boy he is, that he must never lose that. I send him back to the ocean, away, so I can cry harder.

By the time they return to shore I’ll have myself composed. But my oldest immediately senses something amiss. She mouths to me, “Are you okay?” And pantomimes tears rolling down her cheeks.

The moving truck has been in their driveway all day.
Six year old Tristan came sobbing to my bedroom a little while ago.
“The truck is in their driveway. My best friend is moving. I am so sad. I’m so very sad.”

I brought him into my bed and held him as he cried, hiccuping and shaking and hanging his head.
“I know you are sad,” I told him. “I’m sad they are leaving too.”

I told Tristan that he will still see Alex again before he leaves. He can write Alex a letter before he goes and we’ll be able to call him and even FaceTime him too.
I told Tristan I know it is hard when you have a friend leave you. I explained that what he is feeling means he loves Alex a lot.

I was crying too, tears running down my cheeks onto his shirt. I was crying for his pain over having a friend move away but I confess that’s not all I was crying about.

Tristan doesn’t fully understand why this hurts me so much.
I hurt because I can’t stand the thought of it…

I cannot help but wonder: if this is how he feels when a friend moves away, how will he cope when I go away forever?

I know my family will accept my death. There is no other way. But the fact I have to spend my days thinking about these things tears me apart.

I know the impact of the death of a parent is everlasting.
I know it is something you deal with but never get over.
I hate that I will do this to my children.
I hate that I cannot ever fully have this out of my mind.

I hate cancer.
But I love my family more.

Tristan, I’m doing everything I can to make that horrible day as far from now as I can. I don’t want to die and leave you, or Colin, or Paige, or Daddy, or Nana, or Grandpa, or Uncle Mark. I don’t want to leave my friends. I don’t want this life to end, and certainly not so soon.

But when that day happens and I do die, it is more than just about being what I want.

Not everything is in my control. If it were, we wouldn’t be where we are now. Trust me.

Wanting my life to be long, wishing for it, hoping for it… these things just aren’t enough.
Cell biology and tumor features and available treatments will have more to do with the length of the rest of my life than any wishes or hopes or dreams.

But I’ll still keep those wishes and hopes and dreams, sweetheart, because I won’t give up on you.

Once or twice a week I awaken in the middle of the night with a poem in my head. I reach for my phone and I type frantically. I go back in the morning, or after a few days, and read what I’ve written. I know the words are important, streaming from my head like water breaking through a dam. This poem came from one of these middle-of-the-night sessions.

If you let me

If you let me
I’ll cry you a river
Scream at the moon
Hold your hand
Kiss your mouth
Feel your heartbeat
Dream of more
Fear the end
Wish it were different
Pound my fists
Swear a blue streak.

If you let me
I’ll give you strength
Find a reason
Deliver some hope
Take a needle
Feel the pain.

If you let me
I’ll be grateful
Feign bravery
Take a stand
Do my best.

In the end
I’ll whimper softly
Try again
Give a last kiss
Take a last breath
Slip away.

The months and years go by. Like all of you, I mourn the quick passage of time. “Where did the school year go?” I hear my friends asking.

Projects we hoped would be accomplished — tasks we hoped would be done — sit unfinished. Organizing photos, cleaning out a closet or a room, reading that book a friend recommended— many things went undone in the dark and cold months of winter.

Maybe there were emergencies, maybe there were health issues, maybe you just couldn’t get the energy together to accomplish everything you wanted.

Regardless the reason, there can be a bit of disappointment when a season ends.

At the time of my mastectomies my reconstructive surgeon placed tissue expanders in my chest. These were temporary bags of saline that would be slowly filled to stretch out my skin to make room for the silicone implants that would eventually take their place. Each week, like clockwork, I returned to my surgeon’s office. He accessed a port in each expander with a needle, and added saline to each side to make it bigger.

Each time after a “fill” my chest would feel tight. The skin wasn’t big enough for the volume inside, and it would react to the increased pressure by stretching. Until the skin could replicate there was achiness, tightness, a slight ripping or tearing feeling.

A similar sensation happened to me during my pregnancies; the growth happened fast, I got stretch marks. I had visible proof my skin just couldn’t keep up: the growth was too rapid, too harsh, too vigorous.

I often wonder if mothers and fathers get psychological stretch marks when we are asked to accommodate changes we’re not quite ready for.

What can we do? What options do we have? None. We must “go with the flow” and do the best we can. Our children grow and change whether we like it or not.

We do them no favors by trying to protect them, coddle them, and keep them young.

We give them wings to fly when we give them tools to be
confident
and caring
and inquisitive
and trusting
individuals.

I am often moved to tears as I watch my children grow.

I sit in wonder at the succession of infancy, childhood, and adolescence.

I know that as a mother I lack many skills, but I also know that the words I have written in my blogs and essays will one day be a gift to them tooNot a gift to the children that they are, but instead a gift to the adults that I am raising them to be.

Each June as the school year ends I marvel that another academic year has passed.

The growth happens too fast.
The growing pains hurt.
The stretch marks might be invisible, but they are surely there.

I’m re-posting this piece quite simply because I find that when I re-read my pieces I find something new in them each time. Maybe readers will, too. Even though it was only written in November, I find it interesting to look back on what my mindset was then, only weeks of learning about my cancer metastases. The idea for the post below came from re-reading A bookmarked life. The idea that there are consistency, permanence, and predictability in the world is a mantra we simultaneously embrace and need while also knowing it’s patently a falsehood… everything is always changing, it just depends by how much.

……………………………………….

Each day is different. Each moment, too.
It still seems surreal, this diagnosis of metastatic breast cancer.

It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, I.V. infusions, medication refills all start to fill my calendar.

I start making lists of things I need to do. I prioritize them.

It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.

The small moments are the ones that bring tears to my eyes. Tristan’s little voice saying, “I love you, Mama. You’re the best Mama in the whole wide world” is enough to make me misty.

I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.

I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.

I try to be the one to do things with my children as much as I can. Even if there is a babysitter in the house Tristan always reads to me at night for his homework: that is sacred. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.

I try to do the little things: helping Colin with a school project, keeping Paige company while she does homework, watching a sports practice if I can. I go to the grocery store and I work on the holiday card. I still take pleasure in getting the stubborn stain out of Clarke’s dress shirt that the dry cleaner couldn’t.

My motto is that I will do as much as I can for as long as I can.

I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed the first time — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down. Of course now the fear has been realized. I am living it. I am living my nightmare, one many people share.

And yet, the morning comes.

I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends.

Each day is one more than I had the day before.

But let’s be clear: there is no joy in this disease.

My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.

I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.

I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long with that one last? My body holds the answers, but it’s not showing its hand yet.

I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.

I walk past people on the street and know they have no idea what is going on inside my body.

People in front of me in line at the gas station don’t know there’s chemo in my purse.

I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).

Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible.

One of the things that still astounds me about grief is how it only takes a moment to be jerked back into its grasp, even years after a loved one has died. It still happens to me with Barbara. I’m going along, minding my own business, and I see something, hear something, touch something and it reminds me of her. And it hurts just as much as it did three years ago.

Our senses betray us, provide the conduit to those places in our memory we think are closed and safe. I’m not sure I’ll ever be safe. I think we stay vulnerable, sensitive, fragile. That’s what happens when you really love someone.

…………………………………….

October 6, 2009

The moments catch me off-guard,
like my brother used to do
when we were kids.

He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.

He would leap out,
scaring me,
terrifying me,
and I would scream
and shake
and cry.

That’s what these moments do:
they make me
scream
and shake
and cry.

Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.

“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”

And so we cried.
Together.
And we talked.
Together.

Tonight
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
emotional assault.

I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.

I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.

But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”

There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.

I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
waiting,
lurking,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.

And so I acted just like I did when I was a
child and my brother scared me.
I screamed.
I shook.
And I cried.

I vowed not to let my guard down like that
Again.

I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.

And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.

It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.

One day
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.

Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…

Today’s post is not about cancer. This post, about grief, still affects me every time I read it. I am hoping that those of you new to the site are finding this month of re-posts to be a good introduction to my writing. Hopefully it’s allowing you to see some of the life experiences that have gotten me to where I am. It’s been very interesting for me to go back and re-examine so much of my writing through this new lens of metastatic cancer.

This post was written the day after my beloved mother-in-law’s sudden death in a car crash.

………………………………….

Written September 17, 2009

She went up to bed tonight,
Still pink-eyed and shaky.
Finally calmed enough to hopefully get some rest.
And as she walked into her room,
Somehow,
From beneath her bed,
The bright kaleidoscope patterned paper
Caught her eye.

I heard the sobs,
The wails,
The primal,
yearning,
cry.

“My birthday present.
From Grandma.
The one she gave me early.”
She stood pointing at it,
Gaze averted,
Like a child pointing at a dead
Animal in the middle of the road.

Together we looked.
And then all at once it hit me.
I knew what she was talking about.

Two weeks ago,
When my in-laws were visiting,
Paige’s grandmother had given her a wrapped box
And said,
“This is for your birthday.
Put it somewhere safe.
Don’t open it until October 28th.
I know it’s something you’ll like,
But you have to wait until then,
Okay?”

And so,
Because that’s the kind of 10-year old she is,
Paige didn’t peek,
Or lift the corner of the paper,
Or ask her brother what was in it.

Instead,
She carefully put it under her bed
To wait until October.

We had no way of knowing we’d never see Grandma again.
No way of knowing that was the last present that would be bought.
No way of knowing that a truck which had no business trying to pass anyone,
Much less several vehicles at once,
Would slam head-on into my in-laws’ car and kill our loved one.

Tonight,
The very sight of the box,
And the thought of its giver,
Brought her to tears,
Racked her with sobs,
Riddled her with grief,
Filled her with anger,
And sadness,
And loss,
And pain,
And confusion,
And did the very same
To me.

Elizabeth Edwards reached many people because she was in the public eye, but inspirational people also live quiet lives. We can be inspired by Edwards’s grace and courage as she dealt with the challenging parts of her life in the same way we can find inspirational people around us each and every day. These are all people we can connect with and learn from. In doing so, we better ourselves.

When she was diagnosed with metastatic cancer people told me not to worry: it wouldn’t happen to me just because it happened to her. That’s true. It wouldn’t happen just because it happened to her. But it did happen. And now I look back on everything I’ve said for the past 5.5 years and I am glad I expressed those thoughts as they were happening. Because my fear came true.

…………………………………..

(from December 7, 2010).

I didn’t know Elizabeth Edwards. In fact, I wrote a piece critical of her when she initially stood by John after his affair. I was disappointed when she gave an interview on CNN in May of 2009 and spoke only of John’s “imperfection” rather than calling him the cheater he was and kicking him to the curb. I was angry she hadn’t used her interview time to talk about herself, her cancer, her life: the topics I wanted to hear about. I was angry at her for not claiming her remaining years of life as her own.

So why am I sitting with tears in my eyes because she has died?

I cry because it makes me feel vulnerable and scared of what this disease can do to me: what it did to her.

Yes, I know… there are plenty of men and women who get cancer, have treatment, and stay in remission for the rest of their lives. And, in essence, isn’t that what every cancer patient hopes for, as Betty Rollins wrote, “to die of something else”?

I don’t think it makes me pessimistic, depressing, or negative to think that I am vulnerable.

It’s the truth. It’s my truth.

Anyone who hasn’t been to the oncologist with me to see my risk-of-recurrence charts, my mortality charts, my decision-making discussions along the way can’t say to me “Oh, don’t worry, that won’t be you.” No one, including me, knows how it will go.

People tell me: stay strong, just think positive, you can’t generalize from her situation.

I respond: I am strong, I hope for the best. I don’t think positive thinking is going to save me if there are remaining cancer cells still in me.

I hope that people won’t say to someone who has been diagnosed with cancer, “Don’t worry, what happened to Elizabeth Edwards won’t happen to you.” Because while we do everything we can to ensure we die of something else, it just isn’t always the case. In 2006 her oncologist told her that there were many things going on in her life, “but cancer was not one of them.” Things change quickly, cancer can recur when you least expect it.

I have sympathy for her family. I cry for her children. I am saddened about the years she spent with a man who didn’t deserve her. I am angry about the time she wasted on him. I hoped she would be an example of someone who would keep cancer at bay.

“Two Cents” was one of the first things I wrote for the blog. I don’t know if it’s poetry or a rant or what. I distinctly remember writing it: I scribbled it down on the back of a brown paper sleeve from a Starbucks donut as I waited for Paige to finish her piano lesson one sunny day several years ago. I’m quite sure the impetus was being told that “things happen for a reason.” I still find this one simple, but true. Many readers still have a soft spot for this early piece in which I provide my own two cents’ worth.

Revisiting old blogposts is taking me on an emotional rollercoaster. Being on the other side — having things I was most afraid of actually coming true — gives the pieces a whole new meaning. Of course one of my main fears was that my cancer would return. Of course, it has, and worse. The metastases I have now are exactly what I feared most after my treatment was complete the first time around.

Again, I’d like to say that even when I feared it, as I would think most people who have had cancer do have fear of cancer returning/metastasizing, hearing the words “You have Stage IV cancer” bears no relationship whatsoever to the fear you have when it’s a hypothetical. The anxiety, the panic, the worry… all of those were only a fraction of what it felt like to be told it was actually true. This is what my life will be.

As I re-read the post below I got emotional. The words I wrote here over two years ago are still so true for me. This post captures my fervent wish to document my thoughts and feelings for my children. I still feel a strong desire to be understood. Perhaps some of this is because I think in many cases people with cancer do not feel understood.

Katie and I became friends after I read her book. Great friends. We talk about Suzy. We talk about french fries and silly socks and Pilates. We talk about her work and we talk about our kids. We talk about cancer. We talk about the most frivolous parts of life and the most serious. As I write below, “Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.” In life, so does her daughter, Katie.

………………………………….

There comes a point in your life when you realize that your parents are people too. Not just chaffeurs, laundresses, baseball-catchers, etc.– but people. And when that happens, it is a lightbulb moment, a moment in which a parent’s humanity, flaws, and individuality come into focus.

If you are lucky, like I am, you get a window into that world via an adult relationship with your parents. In this domain you start to learn more about them; you see them through the eyes of their friends, their employer, their spouse, and their other children.

I had read an excerpt of the book in a magazine and had already been following Katie on Twitter. I knew this was going to be a powerful book for me, and I was right. Katie is a columnist for The Wall Street Journal and went on a mission to learn about her mother after her mother died in June, 2005 from lung cancer. In an attempt to assemble a completed puzzle of who her mother was, Katie travels around the country to talk with those who knew her mother: a golf caddy, some of her Pilates students, her doctors, and even people who interacted with Suzy via Ebay when she started buying up decorative glass after her diagnosis.

Katie learns a lot about her mother; she is able to round out the picture of who her mother was as a friend, a wife, a mother, a strong and humorous woman with an intense, fighting spirit. These revelations sit amidst the narrative of Katie’s experience watching her mother going through treatment in both Arizona and New York, ultimately dying at home one night while Katie and some family members are asleep in another room.

I teared up many times during my afternoon getting to know not only Suzy, but also Katie and her sister Lizzie. There were so many parts of the book that affected me. The main themes that really had the mental gears going were those of fear, regret, control, and wonder.

I fear that what happened to Suzy will happen to me:

My cancer will return.

I will have to leave the ones I love.

I will go “unknown.”

My children and my spouse will have to care for me.

My needs will impinge on their worlds.

The day-to-day caretaking will overshadow my life, and who I was.

I will die before I have done all that I want to do, see all that I want to see.

As I read the book I realized the tribute Katie has created to her mother. As a mother of three children myself, I am so sad that Suzy did not live to see this accomplishment (of course, it was Suzy’s death that spurred the project, so it is an inherent Catch-22). Suzy loved to brag about Katie’s accomplishments; I can only imagine if she could have walked around her daily life bragging that her daughter had written a book about her… and a loving one at that.

Rosman has not been without critics as she went on this fact-finding mission in true reporter-style. One dinner party guest she talked with said, ” … you really have no way of knowing what, if anything, any of your discoveries signify.” True: I wondered as others have, where Suzy’s dearest friends were… but where is the mystery in that? To me, Rosman’s book is “significant” (in the words of the guest) because it shows how it is often those with whom we are only tangentially connected, those with whom we may have a unidimensional relationship (a golf caddy, an Ebay seller, a Pilates student) may be the ones we confide in the most. For example, while Katie was researching, she found that her mother had talked with relative strangers about her fear of dying, but rarely (if ever) had extended conversations about the topic with her own children.

It’s precisely the fact that some people find it easier to tell the stranger next to them on the airplane things that they conceal from their own family that makes Katie’s story so accessible. What do her discoveries signify? For me it was less about the details Katie learned about her mother. For me, the story of her mother’s death, the process of dying, the resilient spirit that refuses to give in, the ways in which our health care system and doctors think about and react to patients’ physical and emotional needs– all of these are significant. The things left unsaid as a woman dies of cancer, the people she leaves behind who mourn her loss, the way one person can affect the lives of others in a unique way… these are things that are “significant.”

I woke up in the middle of the night thinking about the book. My head spun with all of the emotions it raised in me. I think that part of the reason writing has become so important to me is precisely because I do realize that cancer can return at any moment. And if you don’t have an author in the family who might undertake an enormous project as Katie did, where will that explanation of who you were — what you thought — come from?

Is my writing an extension of my desire to control things when cancer has taken away so much of this ability?

Is part of the reason I write an attempt to document my thoughts, my perspective for after I am gone… am I, in a smaller way, trying to do for myself what Katie did for her mother?

If I don’t do it, who will do it for me?

And in my odd way of thinking, am I trying to save anyone the considerable effort of having to work to figure out who I was– deep down?

My blog originally had the title “You’d Never Know”: I am telling you things about myself, my worldview, and my life, that you would otherwise have no knowledge of. One of the things people say to me all the time is, “You’d never know to look at you that you had cancer.” After hearing this comment repeatedly I realized that much of our lives are like that:

If we don’t tell someone — share our feelings and experiences — are our lives the proverbial trees falling (unheard) in the forest?

What if you die without being truly understood?

Would that be a life wasted?

If you don’t say things for yourself can you count on others to express them for you?

Further, can anyone really know anyone else in her entirety?

After a loved one dies, there always seems to be at least one mystery person: an individual contacts the family by email, phone, or in person to say, “I knew your loved one: this is how I knew her, this is what I remember about her, and this is what she meant to me.” I know that this happened when Barbara (my beloved mother-in-law) died suddenly in a 2009 car crash. There are stories to be told, memories to be shared. The living gain knowledge about their loved one. Most often, I think families find these insights comforting and informative.

Katie did the work: she’s made a tribute to her mother that will endure not only in its documentation of the person her mother was (and she was quite a character!) but also in sharing her with all of us.

Even after her death, Suzy has the lovely ability to inspire, to entertain, to be present.

I could talk more about the book, Katie’s wonderful writing, and cancer, but I would rather you read it for yourself. I’m still processing it all, making sense of this disease and how it affects families, and being sad that Katie’s children didn’t get to know their grandmother. Katie did have the joy of telling her mother she was pregnant with her first child, but Suzy did not live long enough to see her grandson born. In a heartwarming gesture, Katie names her son Ariel, derived from Suzy’s Hebrew name Ariella Chaya.

I thank Katie for sharing her mother with me, with us. As a writer I learned a lot from reading this book. I’ve said many times recently that “we don’t need another memoir.” I was so wrong. That’s like saying, “I don’t need to meet anyone new. I don’t need another friend.” Truth is, there are many special people. Katie and Suzy Rosman are two of them.

My mom passed away six years ago, when I was 24, after a five-year battle with cancer. I’m getting married in a few months and I’m finding two things difficult: 1) going through a big life change, and the actual planning of the event, is making her loss feel much more at the forefront than I expected; 2) I’m struggling with marrying someone who didn’t know my mother and doesn’t understand (and honestly, not sure how he can, not being there) my grief.

My questions are: how do you help the new people in your life know the person you lost and understand the depth of your grief? And how do you deal with the new kind of grief that comes with entering a new phase of life?

…………………….

My mother, Dr. Rita Bonchek, spent her career as a psychologist specializing in grief, loss, death, and dying. She had some thoughts on the subject. I decided to add my own take on it; that perspective appears after hers.

……………………..
Dr. Rita Bonchek writes:

In American society, the topic of death causes great discomfort so people do not think about or discuss the subject. When the death of a loved one occurs, the bereaved are often encouraged to put the occurrence in the past. Freud felt that the mourner needed to ” let go” in order to move on. However, when Freud experienced the death of his favorite grand-child, he often expressed with great sadness that he would never get over the loss.

What is not appreciated about the death of a loved one is that “Death ends a life but it doesn’t end a relationship that lives on in the mind of the survivor.” Some studies have shown that mourners hold onto the relationship with the deceased with no notable ill effects.

A childhood death of a parent can be a devastating event. How the child grieves is extremely individual and based on the child’s age when the parent died, the cause of the loss, the quality of the parent-child relationship prior to the death, and the support system available both at the time of the loss and afterwards. If a surviving parent removes all items and pictures of the deceased and does not talk about him or her, the child is denied the grieving process. The secrecy and the inability to have a shared grieving between the child and family that shares the loss is a travesty.

The mourning for a mother never really ends. Even after many years while there may not be active grieving, there are what one child called “mommy-missing feelings.” And what does a mother provide for a daughter: support, advice, a significant person who can help and validate the child during development. No one else is so uniquely important to the child as a mother who helps her to form an image of herself. With this self-image, a daughter is helped to determine how to interact with the world and the people in this world. A daughter’s feelings, thoughts, hopes, desires and attitudes are influenced by a mother. But this mother does not have to be the mother who existed in real life but who is a mother who exists in the daughter’s heart and mind. This is a mother who is carried within a daughter forever.

When a mother-daughter relationship has been strong and positive, a mother loves a child in a very intense and special way. A daughter will miss a mother’s protectiveness, loyalty, encouragement, praise, warmth, and, as the daughter becomes a woman, an adult-to-adult friendship. There are special times in the developing daughter’s life in which the absence of a loving person is painful: graduation, confirmation, Bar/Bas Mitzvah, a wedding celebration, the birth of a child, etc. This is when the wound is re-opened.

Who the daughter was when her mother died is not who she was after the painful event. Every death of a loved one changes us and causes us to re-grieve the loss of other loved ones. Hope Edelman, in her book Motherless Daughters encourages women to acknowledge, understand and learn from the changes that occurred as a result of the early loss of a mother. It can take years. With reflection and understanding of what was lost when her mother died, a daughter can, with greater sensitivity, become her own role model as she creates a strong family and friend network of her own.

…………………………….
I had the following additional thoughts:

Even though the death was six years ago, it happened to you at a time before marriage and/or motherhood. While not relevant to all women, these are often defining events in their lives. While you had your mother for your childhood, oftentimes daughters do not fully appreciate their mothers until they become wives and mothers themselves. When you no longer have a mother to admit “now I understand what you meant” or “I’m sorry for how I behaved as a child” it can feel that there is unresolved business at hand. Not being able to ask, “Is this how you felt on your wedding day?” or “What was your day like?” is difficult.

Of course, a wedding is one of these events that is tied to family. How can you possibly explain the ways in which these occasions make you miss your mother? As my mom said, it’s not just the relationship you had that you grieve, it’s the relationship you could be having now. There is no way to fill that void, no one can fill that space. I think that incorporating your mother and her memory into your ceremony may provide a way for her to be remembered and present during your wedding. Because your fiance did not know her, he will not miss her in this event. You will, however, as some of the guests at your wedding will too.

It’s a common misconception that talking about your mother or acknowledging her absence will “make people sad.” On the contrary, I believe that talking about her and her absence is appropriate. One way I think this is appropriate is to mention her in the wedding program and/or light a candle during a portion of the ceremony that names those who are “special to us but not here to share this day.” I have seen an acknowledgement of special friends and family who are deceased but remembered on this special day. A paragraph, properly worded, could mention your mother’s role in raising you, making you who you are today, and how you wish she were here to share this occasion. Similarly, wearing a piece of her jewelry or clothing (like a veil) or carrying her favorite flower in your bouquet might help you feel closer to her on the actual day.

Grief sneaks up on you when you least expect it; the reflexive reach for the phone is a hard habit to break. Both happy and sad events can make you miss loved ones. Every little thing reminds you of your loved one, the things you did and the things you had yet to do. You grieve the relationship you lost and the one you had yet to build. The relationship was truncated, and that cannot be fully appreciated by someone who has not experienced it.

I don’t know if you have shared a lot about your mother with your fiance, but I think it’s important to do so before you get married. I think it’s important to write about her and talk about her with him. He’ll never be able to understand fully, and he’ll never miss her since he didn’t know her as you did. But he does need to understand how important she is to you now even though she’s no longer alive. That may not be intuitive– although your mother died six years ago she is still a very important part of your life.

It’s important to say that not all of the memories surrounding your wedding would necessarily be happy; after all, weddings can be prime opportunities for mothers and daughters to clash. However, the pivotal moments of walking down the aisle, first dance, photographs, and so on can be especially difficult.

Sometimes when we grieve we don’t know exactly what we need, and in the end, no one can provide the “fix” for us — that could only happen if our loved one came back. Realizing that you don’t really know what you need all the time as you go through this is important, too. Something your fiance says might be incredibly aggravating one minute (a reminder that “he just doesn’t understand”) but other times the same thing may strike you as supportive. He’s in a tough situation because he’s trying to support the woman he loves on a day that is supposed to be one of the happiest days of your lives together. However, it has a component of pain involved for you. He needs to accept that dialectic and not try to gloss over or erase the pain that will accompany all of the happy days you will have together. He needs to know that grief will be a part of every happy event you will have in the future because your mother is not there to share it. The sooner he can accept that truth, the better it will be for both of you, I think.

I hope that some of these thoughts will help you in the months leading up to your wedding and that you can find a way to incorporate your mother’s memory into your ceremony. I know she will be in your heart and on your mind.

I look great. I look healthy. I’m not gaunt or drawn or pale.
I wear makeup most days, and some days I ever wear boots with a heel on them.

I smile, I laugh.
I take a slight jog up the front hall steps when I feel like it.
I crack jokes, I roll my eyes when standing in a long line, I gossip with my friends.

I wear gloves a lot, I have to moisturize my feet and hands at least a dozen times a day.
I buff my feet, I examine them for cracks and bleeding. I stick ice packs on them when they burn from the chemo.
I can’t feel my fingertips, yet portions of them crack and peel and are painful and raw.
I can’t hold a pen or twist off a bottle cap.
I take pills all day long.
I’m swollen, I’m tired, my mind can’t stop racing.

I tell time by “on” weeks and “off” ones.
Of course the doctors understand my situation.
They know what this diagnosis means.
Even ones that have nothing to do with cancer call to check on me.

When I go to my sons’ school some of the teachers and moms cry when they see me.
“You look good,” they say. This a compliment. Sometimes they say, “You don’t look sick at all. You’d never know.”
That is shorthand for, “You don’t look like you’re dying but we know you are.”

I hear people in line to buy holiday gifts complain about the sniffly cold they have or the poor night’s sleep their child had.
They might be complaining about something more serious, but still something that can be fixed.
Time will heal what ails them.
I am not so lucky.

I am jealous.
I am jealous that this is their only medical concern.
I’m not jealous of what they wear or the car they drive or the house they live in.
I’m jealous of their health status.

I’m not in denial. This diagnosis is a nightmare.
My life will always be full of chemo and side effects and worry and monitoring and drug refills and hospital visits.
But my life will also be full of great memories, of laughter, of smiles.
There will be tears. There will be pain. There will be heartache.
But there will also be joy, and grace, and friendship.

I don’t know for how long. I don’t know if they will be in equal measure.
They say I look good. They say, “You’d never know.”
For now I know it’s true.

There will come a day when it’s not true.
And they will lie.
And I will know it.
And someday, then, I will know the end is near.
But that day is not today.

Sometimes your life feels like a nightmare.
Sometimes nightmares happen in the day.
Sometimes uncertainty is a needy child that won’t leave your side.
Sometimes there isn’t enough strength.

Sometimes it’s more than you can handle.
Sometimes the end is near.
Sometimes there isn’t anything you can do.
Sometimes staying strong isn’t an option.

Sometimes a word or gesture or deed can bring you to tears.
Sometimes strangers show the kindness that should be shown by friends.
Sometimes you can’t see which way the road will go.
Sometimes all you can do is research, then close your eyes and guess.

Sometimes strength may look like denial;
Sometimes you must trick yourself to get through the day, or hour, or minute.
Sometimes the reality is so unfathomable you must push it aside.
Sometimes the pain is too great.

Sometimes people don’t understand.
Sometimes they make what’s hard even harder.
Sometimes the kindness of friends makes things bearable though,
Somehow the strength of love can keep you going for a while.

Sometimes you get lucky.
Sometimes you don’t.
Sometimes what happens has nothing to do with you.
But somewhere, deep in the darkness, you must hold out hope.

The following is a piece my mother wrote this week at my request. Dr. Rita Bonchek spent her career as a psychologist specializing in grief and loss. There is no one I know who is as insightful into the grief process as my mother. So much of the information I share here on this website was gleaned through years of listening to my mother talk about these subjects.

My mother gave me the gift of discussing difficult subjects with relative ease. I never could have known how they would come to play in my own life, most recently with the death of my mother-in-law in 2009 and my stage IV cancer diagnosis this October. She has written posts on this website about the difference between guilt and regret (here) and daughters mourning the death of their mothers (here).

We all will have experience with grief and loss. It’s a universal part of life and yet most people find themselves poorly equipped to handle the emotional and practical aspects of the death of a loved one.

After the killings in Newtown, Connecticut I asked my mom if she would be willing to write anything for me to post on my blog. I know so much has been published in the past eight days about children and their grief, but I have opted to give my readers the opportunity to read what she says. Sometimes different posts on the subject will resonate differently. I hope you will find helpful information here.

In Dr. Rita Bonchek’s words:

Helping children, especially the very young, to understand the death of a loved one is never an easy task. Not only do children’s perceptions of death include confusing images which lie between fantasy and fact (as when cartoon characters are killed and then recover instantly), but children’s vocabularies are inadequate to express their feelings and fears.

The following are suggestions to help you help your child:

1. If the death was unexpected, convey the facts in a straightforward way. Be sure to answer the who, what, why, when, and how questions. You will probably have to repeat the facts many times as your child struggles to understand what happened. If you want to check on what your child knows about the death, ask him or her to tell you what happened. Encourage your child to come to you or another designated adult when questions arise.

2. Talk about things your child has already noticed but might not understand (“You know I’ve been crying a lot. It isn’t anything you’ve done. Sometimes I think about Grandpa and I cry”).

3. Give your child permission to cry by modeling that behavior or by saying, “When I cry it makes me feel better.”

4. Use the word “died” and be sure the child understands the finality of death. One child said to his mother, “I know Daddy is dead but when is he coming home?” Children are unable to deal with euphemisms such as “eternal rest” or “We lost your uncle today.”

5. Be sure to convey the clear message that the death was not the child’s fault and there was nothing that he or she could have done. A child’s words, “I wish you would go away and never come back” or the the thought, “If I didn’t have a brother I could have all of the toys or all of Mom’s attention” do not cause a death.

6. If your child asks a question that you don’t know the answer to, say “I don’t know” or ask what the child thinks.

How a parent handles his or her own grief has a definite impact on how a child grieves. If a parent does not mention the death, avoids all discussion of the event, and/or removes pictures of the deceased, the child will easily follow these cues. You can’t protect a child from hurt or sadness by pretending nothing happened and hoping the child won’t notice. Children sense when something is wrong.

A child can also be overwhelmed by a parent’s excessive grief, which, unless it is given proper explanation, may serve as a source of insecurity or leave a child emotionally abandoned. If you cannot help your child to grieve, be sure someone is available to provide understanding, support, and information.

Parents cannot assume a child feels nothing about the death just because the “adult” forms of grieving are absent. Some children may quickly resume play activities which gives the appearance of not caring. Play may be an attempt to discharge anxiety, to distract one’s self, or to find relief from the sadness of thinking about the deceased.

Research has shown that children and adults grieve in different ways from each other. However both adults and children should abide by Shakespeare’s advice:

Give sorrow words; the grief that does not speak
Whispers the o’re fraught heart and bids it break.

Unresolved grief can interfere with a person’s ability to function. Those adults and children who can work through their grief and express their emotions openly will be stronger and better able to lead full and satisfying lives.

Yesterday a follower on Twitter wrote: I am interested to know what the differences are between grief of men and women.

I fired off a series of tweets. Each statement, 140 characters long or less, told one of the many important things I have learned through the years. My mother, as many of you know, spent her career as a psychologist specializing in grief and loss. One of my childhood memories is occasionally going to night school with Mom and sitting in the back of the classroom. I always loved the campus bookstore and was able to milk a few treats out of her along the way for behaving well while she attended class.

When she finished her dissertation I read it. It was an in-depth analysis of families who had experienced the death of a young child and what happened to the family dynamics after that tragic loss. I think her work in the 1980s was ahead of its time. Publishers were not interested in manuscripts about children and death. I still wish she had been able to share her insights with more people. Fortunately, she did (and still does) share her insights with me.

I understand that these are stereotypes, generalizations. I know that “not all men are like this.”

One way of dealing with grief is not better than the other, but realizing that there are differences (not only in adults, but also in children) in grief is important.

In general, women talk their way through grief. They need to process it by verbalizing their feelings. They want to talk about the child that has died. They want to relive memories, talk about what events will be missed in the future. Women often need to say the same thing, (re-hash) what happened; they are trying through words to make sense of act that doesn’t make sense.

In general, men do not want to do this. Most men do not like to talk grief out in the same manner. More often, men usually are focused on acts. On doing. On fixing things. The death can’t be fixed. They feel powerless and do not want to rehash same sadness. They are often more hesitant to seek counseling or support from others. “Talking won’t change what happened,” they might say, and therefore resist sharing.

If the death was of their own child, this difference can drive a wedge if the mother of the deceased child feels the father is not sharing her grief. She may not recognize that he is, just in a different way.

The mother may withdraw, feel her partner doesn’t understand or share her grief even though they are the ones closest to the loss and should therefore be united in their emotional devastation. She may be more emotional about the loss, crying a lot, for example. The man may be unsure how to respond to the displays.

The mother may feel the father wants to “move on” too fast after the death. Often this is interpreted as not caring, not loving. But that is not true, of course. The parents are each grieving, but in different ways.

There may be blame issues as well. Blame issues could mean, in the case of Newtown shootings, that on the morning of the death, the child had a cold. One parent said “s/he is okay to go to school” and other said no. Tragedy happened. “If only my spouse had listened to me” can easily spiral into “it was your fault.” If child died while in care of one parent, the blame negotiation can be a stumbling block between parents as well. “You should have been watching,” for example.

Finally, women more often want to use counterfactuals in times of crisis. Women frequently play the “what if” game as part of their talking through the loss, even if the death was not in their own family. “What if that had been our child?” “What if we had moved to that town last year when you switched jobs?” “What if that happened here?”

More often than not, men will say, “but it wasn’t/we didn’t” and stop. In most cases, men don’t want to indulge hypothetical discussions that spiral. They frequently have different processing styles.

These differences may come into play if a person seeks grief counseling. The counselor that is right for one person will not be the best fit for another. Finding a counselor who is aware of these differences and is more consistent with your own methods of working through grief will lead to a more successful outcome.

There is so much more to say on this topic. These differences don’t just apply to grief. I do think that they can help to explain some of the distance that a death in the family can create at fragile time. This may be one reason why families so often unravel after the death of a child. Family dynamics are necessarily thrown into turmoil and the surviving child/ren (if any) will find their role in the family may undergo significant change as well. Those issues will be material for another post.

I’d be interested to hear in the comments if you and your partner have different styles of coping, and whether you think these generalizations ring true. I’m tossing these ideas out there for you to consider in light of how we all have been thinking about the Newtown families this weekend.

I’m re-posting this piece today in light of the school shootings nearby in Newtown, Connecticut. I know there is a lot of material out there this weekend on children and grief, but I’d like to add mine as well. This post was originally written a few days after my mother-in-law, Barbara, was killed suddenly in a car crash in 2009. I think these observations apply now, too.

I will honor childhood today.

………………………………………………….

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

It has been ten weeks since I was diagnosed with stage IV breast cancer. After I was diagnosed the first time with cancer in 2006 I began to mark time in a new way.

The parent of a newborn starts with days, then weeks, then months and fractions thereof. “How old is the baby?” a parent is asked. “He’s 5 days old” or “11 and a half weeks old” or “16 months,” the reply will come. But when that child is a teenager no one will mark his age in days and half weeks and months. The importance of those fractions will fade. Once he’s got years under his belt their significance is muted.

Time now gets marked in rounds of chemo, time elapsed since diagnosis, months without disease progression. There’s always a mental countdown, a cognitive calculation going on.

I find myself obsessed with time in a new way, but also rapidly losing track of it. Granted, some may be chemobrain. I wonder now that I am on chemo for the rest of my life what it will mean to my brain. It’s a necessary evil, but concerning. The chemo that kills cancer cells is also killing brain cells. New evidence shows the reality of this condition, no longer a punchline or mere excuse for forgetfulness.

I always encourage people with cancer (and any illness) to keep a calendar of their treatment. There is so much to keep track of that having an easy reference point is good. When did you change doses of medications? when did you see certain side effect symptoms? Jotting them down in a calendar or noting them in a smartphone calendar can be helpful. Sometimes on paper, patterns will emerge.

Grief is such a wily companion. Like smoke it creeps into places when offered only the tiniest access point. Grieving the life we thought we’d have is important. It’s easy to say, “lives don’t always go the way we plan” but that undermines the emotional complexities of dealing with serious illness. Just because things don’t go as planned for many of us (most of us?!) doesn’t mean there isn’t a serious adjustment to make.

“Roll with the punches” and “live in the moment” are deceptively simple phrases of advice that are not only absurdly emotion-free but also easier said than done. More than once in the past few weeks I’ve challenged people whose best words of support have been to live in the moment. While I understand the ideology, and agree with the premise that we must enjoy the time we have, I defy anyone without a stage IV diagnosis to tell me that it’s the quality of your years, not the quantity of them. These are things that healthy people say. Yes, quality matters. None of us want to suffer. I don’t. But years count, too. “Living in the moment” can imply that the grief process should be squelched or has an expiration date. Anyone who has experienced grief knows there is no expiration date.

Of course none of us knows our future. Some people try to tell me they don’t know their future either; they could get hit by a bus tomorrow. I love the response that Jen Smith suggested, “Would you like to trade odds?”

Acceptance of reality must come. Dwelling on the dark side of diagnosis won’t lead anywhere productive if dwelling is the only thing one does. I think that is the real meaning behind the idea of focusing on today. The acceptance of reality does come. Of course, that’s complicated when what the reality of what one’s prognosis is unknown. I have quickly built up tolerance for discussing the most serious and unpleasant ramifications of my condition. I occasionally sleep through the night. But I don’t know how long it will take to wave goodbye to my children in the morning, or tuck them all in at night, or talk about the future without feeling pain with the joy.

I mark the time. I’m back to being someone who counts the months and weeks and days. Counting them, appreciating them, grieving them. All at once.

I load the dishwasher, put in a load of laundry and buy Colin a new white dress shirt
Because I can.

I walk the two blocks between the doctor’s office and the drugstore on a crisp autumn day
Because I can.

I give my children an extra hug, just one more kiss, an additional “I love you” before the bus
Because I can.

But still I worry about today, tomorrow, and the next day.
How can I not?

I put makeup on yesterday.
I can tell it puts people at ease.
If I look “healthy” then they can relax.
If I don’t look sick they won’t have to worry how to act or what to say.

They tell me “You’d never know to look at you. You’d never know you have cancer. You’d never know you’re sick.”

Some moments that’s true. Some moments I feel good. Some days, in fact. And I treasure those.
Some days it’s a lie. It’s not how I feel.
I know it’s a compliment. I take it as such.

The phlebotomist asked me at my oncology appointment yesterday if I’m ready for Thanksgiving.
I wasn’t sure whether to cry or laugh.
Ready?
I don’t know.

Giving thanks. That’s a loaded phrase.

I am grateful I have some time. I am thankful for the kindness that gets shown to me every day by my family and friends.

I appreciate every person who tells me they are lifted by my words, learn from them, say they express something they have felt or even just wondered about.

For every email I get of support,
Every offer of help,
Every playdate,
Every Facebook post, photo, comment
I give thanks.

But cancer sucks. This diagnosis is my nightmare.

But I also know that tragedies happen to people every single day. A life can be lost without warning. I have learned of two sudden deaths of friends’ loved ones this week and I see the pain those losses have caused. I learned it for myself when my mother-in-law died. She did not have time to say her goodbyes.

I don’t like that my life revolves around this disease right now. I try to keep my life focused on others as much as I can. I try to check in on friends who have their own troubles. I try to keep up with the kids. I try to be a good wife and keep the house running. I wish I could be a better wife right now. I try to be strong. I try to suffer on my own time. I try at these things but don’t always accomplish them.

It’s an isolating predicament. Few can know the anguish, the daily trials, all of the parts of my life which don’t get shared with anyone. I share some here, of course, and with friends, but much of it is my own. For now, this is how it needs to be while I continue to process and try to make sense of this new chapter.

Thanks to you all.

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I was honored to be featured in this blogpost from the American Cancer Society titled “Cancer survivors are truly remarkable people” which focused on the post I wrote in the days after my diagnosis giving tips on how to talk to children about stage IV cancer.

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Many have asked about the fractures on my left side. The one that is painful is the one in a rib up near my collarbone. That will probably take two months to heal. It is a fracture caused by cancer in that bone. The cancer must shrink first. Only then can the bone heal. So it will be a slow process.

I start round 4 of chemo tomorrow, on Thanksgiving night. Same full strength dose because I was able to tolerate the last round again. Same regimen: 7 days on, 7 days off.

Of course memories and legacies are on my mind all the time now. I can say for sure that I won’t be remembered for my cooking. I might be remembered for my lack thereof, however! One thing I make well is a citrus cheesecake. I’m quite sure Clarke married me for this dessert. I’ll share it here someday soon.

I miss Barbara, my mother-in-law, every day. It’s been three years since her death in a car crash. I wrote a post about Thanksgiving two years ago and referred to one of Barbara’s traditions– a delectable treat called cranberry ice. So many people asked about it that I posted the recipe. I thought I’d share it here again because I know some people have already made it part of their own holiday traditions. I think that’s just lovely. I’m reposting the information here in case you want to give it a try:

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The way we serve cranberry ice is as a side dish, in place of cranberry sauce. The tart, sweet, cool flavor is delightful.

I like to make a double recipe so there are leftovers… I am giving the instructions for that; if you want to halve it, you may. Because you need to beat it with a mixer as it freezes, don’t make it late at night.

You will need:

2 bags of fresh cranberries

2 packets Knox gelatin

Lemon juice

2 cups of sugar

2 cups of water

Freezer-safe bowl and a food mill, ricer, or strainer

Directions:

Boil the cranberries fully until the skins fully split. Drain the cranberries and run them through a ricer, food mill, or strainer to remove the skins. (I use a food mill that Barbara gave me. It has a hand crank on the top and you turn it around and around and the skinned cranberry puree drops out the bottom. A more updated version is here). Once you have all of the cranberry puree in a freezer-safe bowl, set aside. Take the 2 packets of gelatin and dissolve in 2 cups of water. Add this to the cranberries. Add about 2 cups of sugar (less if you like it very tart). Then add a bit of lemon juice to taste.

Take the bowl and put it in the freezer. As it freezes, take it out a few times (2-3) and beat with electric beaters for about 30 seconds to fluff it up. This will keep the texture airier. If you don’t do this, the consistency will be far too dense and hard. Once frozen, serve with your meal using an ice cream scoop. It doesn’t melt immediately because of the gelatin. Barbara always served in lovely cut-glass footed bowls. I haven’t found ones I like yet, so mine was served in regular bowls today.

I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).

My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.

It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?

I’ve done so much already.

I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.

I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.

Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.

In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.

Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.

I think the phrase “it’s not curable but it is treatable” is important to teach and use.

Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.

As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.

Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because Paige is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, the psychologist had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.

I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.

Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.

A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).

I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.

Today marks the three year anniversary of my mother-in-law’s death. In the days and months after Barbara was killed in a car crash I wondered if I would be able to go one day, one hour, one minute without thinking about her. As grief does, it has quieted; its hold does not intrude so directly. And yet, the icy tentacles of loss invade our lives still. As our children grow, the fact Barbara isn’t here to see them still causes me great anger and sadness. Paige started high school this year, Colin is in 5th grade, Tristan just started 1st grade. These are days of so many changes and celebrations and I wish we could share them with her.

I remember vividly when she first died that I could not imagine there would be a day when I could tell the story of her death without crying. For weeks after she died I didn’t put makeup on, knowing my tears would undo that small effort to gain some normalcy. Then again, I remember thinking, why did I want to put makeup on anyway? Someone I loved was gone, and nothing else mattered.

Most of us have no ritual to show the world we are grieving; the anguish we feel remains mostly private. In a country where so many cultures and religions coexist, we have no universal public display of mourning status. The Jewish tradition of a torn piece of clothing (or a button with a torn ribbon attached to it) does not have an analogous ritual in many other religions. For those of us who are not religious no outward display of mourning status exists.

My mother (a psychologist specializing in grief and loss) and I have long thought a visible display of mourning status is needed. First, it is a visible way to say “handle with care” to the world. There is no way for a stranger to know the reason you haven’t pulled out of your parking spot is not because you are checking your email on your smartphone but instead is because the woman walking in the parking lot looked like your relative from behind and for a moment you thought it was her and you are sobbing in your seat.

Public displays of mourning status could also serve as a signal to others that you are part of a group. One of the hallmarks of grief is feeling alone, that no one understands. If there were some type of visible “marker” of grieving status, mourners would know that there are so many others who share their pain. Teachers, coaches, and others might be more sensitive to the grief of children if such a symbol were shown.

In the absence of mourning symbols, family members must have good communication with schools and workplaces to keep them updated on the grief process. I believe it’s vital to have repeated conversations about death with children who may not be able to articulate their fears and concerns well. Not only will this show others that death and grief are topics that can (and should) be talked about, it will also ensure that misinformation does not persist.

I revisit difficult subjects with my children often in which I ask them to recount (1) what they think happened (“Tell me what you remember”), (2) how they are feeling (“What emotions did you have then? Have they changed?”), and (3) what questions they have (“Is there anything you would like to know more about?”).

I think it’s important to go back to difficult times and discuss them as children get older and their comprehension changes. I have definitely found this to be the case with my cancer. What my young children understood at the time I was diagnosed is very different from what they are able to understand now. If the circumstances of a relative’s death are complicated, it might be necessary to repeat the story to children and even to adults. These are important narratives.

Today is also the anniversary of my paternal grandmother’s death. These two special women are forever in my heart and on my mind today.

There is a natural tendency to turn our heads from things which are upsetting.

But as adults it is our responsibility to be aware of them.

Protecting is not always the right thing.

Jennifer Merendino was first diagnosed with breast cancer in 2008, shortly after her wedding. Her husband Angelo began taking photographs (www.mywifesfightwithbreastcancer.com). Angelo documented her surgeries and treatment all the way through her death in December of 2011 after she experienced metastases to her liver and brain.

The Gathering Place: A Caring Community for Those Touched by Cancer in Westlake, Ohio, said they wanted to exhibit some of Angelo’s photographs in their art gallery.1

After a successful opening, The Gathering Place pulled the exhibit. In their own words:

Shortly after the exhibit was hung some of our volunteers (many of whom are cancer survivors) and our participants found it very difficult and emotionally upsetting to see the exhibition. Because our mission at The Gathering Place is to provide a peaceful, healing and nurturing environment where our participants feel supported and encouraged, we have chosen to remove the exhibit so as to not add to the emotional challenges a cancer journey creates.

It’s not that I can’t understand how someone might find the images disturbing. In fact, I think you are pretty hard-hearted if you don’t. But that is the point. It isn’t enough to say you want to be “a community for those touched by cancer.” It’s important to get the message out: breast cancer isn’t pretty. It isn’t a pink ribbon or a one-day walk to raise money. It isn’t about wearing a pink football cleats in October.

I do not agree with The Gathering Place’s decision to remove the photographs from their art gallery once they had seen the photos, chosen to display them in their gallery, and had a public opening. Despite their stated goals, in this instance they don’t “get it.” The proof of that to me is the web address name The Gathering Place used to announce the removal of the photos from the gallery. The web address for that post is http://www.touchedbycancer.org/2012/07/art-imitating-life/

Art imitating life? No way. Angelo’s art is no imitation. It’s the real deal. It captures the reality of his wife’s cancer treatment for all to see. And sometimes, even when it’s painful, we must look.2

Thanks to PinkRibbonBlues.org for the summary of the timing. You can see Gayle’s post on this topic here [↩]

Today’s post is one of the rare ones that discusses a book I’ve read. I’ve previously written about Dani Shapiro’s Devotion and Katie Rosman’s If You Knew Suzy. Today I share some thoughts I have after reading Darin Strauss’s memoir Half a Life. The book won The National Book Critics’ Circle Award. If you’d like to hear some excerpts, you can listen to an NPR podcast here. It’s gripping radio.

I’m not a book reviewer, and this post isn’t a review; I consider it more of a response piece. Half a Life touched me in many ways and I still find myself thinking about it weeks after closing the cover.

One reason I like to write about books is because our reading of them is so personal. We bring our own experiences to bear on an author’s words; passages which seem to have been written just for us may go unnoticed or unappreciated by others. Reading is a solitary activity, yet we are a community of readers. I welcome comments about this book and/or the general topics.

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I think the Zilke family is lucky.

You might think that is a crazy statement if you know the story of how more than twenty years ago their teenage daughter Celine suddenly jerked her bicycle across two lanes of traffic and into the immediate path of fellow classmate Darin Strauss’s car. He couldn’t hit the brake in time; in truth, there was no time. Whether or not Celine intended to die on that day remains a mystery, we will never know what caused her to swerve. But die she did, with Darin behind the wheel, on that road, on that day, at that moment.

It wasn’t Darin’s fault; it could have been anyone in that particular place at that particular time. If his shoe had been untied and he’d taken a moment to tie it, if he’d forgotten his wallet upstairs, if he’d decided to use the bathroom one more time before heading out with his friends for a round of mini-golf, if… well, if anything… things might have been different.

If games are so common with grief: If only _____, things would be different. We create counterfactuals in our minds, imagining an alternate reality to the one that we just don’t want to accept. We hide away our truth, conceal the reality of pain. Darin did this for half of his life. For all that time he felt the pressure to live his life for two people; to make his life special, meaningful, and worthy of the fact that he lived while a schoolmate did not. Although Celine’s family originally absolved him of blame (and he was never criminally charged after the accident), they later sued him, settling out of court.

So why do I think they are they lucky?

Well, you have to know a little bit about me, and about my grief. If you’re a regular reader you know that my mother-in-law was killed in a car crash (I don’t ever call it an accident, unlike Darin’s case) when a man was driving in the wrong lane on a Wyoming highway in 2009. He was trying to pass an oversized load and was alongside that load at highway speed around a curve. His view obscured by the load, he didn’t know there was a car carrying my inlaws directly in front of him. The newspaper account appears here.

My mother-in-law was killed instantly; my father-in-law, seriously injured. The driver of the other car was charged with the misdemeanor charge of vehicular homicide and later sentenced to 90 days in jail. My account of that heartwrenching day and my visit to the crash site appears here.

Bruce Carter, the man who killed Barbara, didn’t say a word at the sentencing. He never said he was sorry.

I wonder if he thinks about her. I wonder if he thinks about us, the ones left behind.

I think the Zilkes are lucky because now they know. They know Strauss’s grief, some of his thoughts, his emotional shift from guilt to regret. Celine’s parents don’t need to worry, as I do, that their loved one has been forgotten by the person who took his/her life. Strauss’s agonizingly honest description of his thoughts about his actions and their aftermath resonate because they are so well-analyzed. Though the loss of a child in an accident is difficult, perhaps knowing that Celine’s life became a litmus test for so many events in Strauss’s own life would be a speck of reassurance. As Strauss grows older, Celine’s memory becomes his partner in a 3-legged race, bound together, their lives pulled awkwardly into tandem. I think the worst thing is to be forgotten. With this analysis of his life in the last 20 years, Strauss documents the changing nature of his grief.

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The theme of living one’s life for two people– of making his life “count” for two after the accident is one that is especially intriguing. Eventually Darin realizes this is impossible. As a high schooler he had reflexively promised Celine’s mother that he would make his life count for two, but this is the knee-jerk automatic response of a young person agreeing with something he doesn’t understand. Just like the ineffective shrink who pigeonholed Darin’s responses (ultimately making therapy a worthless endeavor), Celine’s mother obtained the answer she wanted from a person unable to fully understand what he was agreeing to. In a similar fashion, when a child dies, a sibling often feels he/she now has to carry the added weight of the unfinished life of the deceased family member. This psychological burden can be overwhelming.

We become responsible for others in many ways– as their friends, siblings, children, and especially as parents– but we do not truly understand these obligations when we first enter these relationships, most certainly when we are young. Growing into the recognition and acceptance of these responsibilities is part of the process. In so many ways we are wholly unprepared for the roles we step into both personally and professionally.

Others had been quick to forgive Darin– to tell him it couldn’t have happened any other way. Like the legal standard of the “reasonable man,” Darin had passed the test; there was nothing he could have done to avoid hitting her. However, his own timetable of forgiveness was much longer. While others instantly granted it to him, it took twenty years for Darin to forgive himself.

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Regret and guilt play a large role in Strauss’s book, I did often disagree with his frequent interchangeable use of the terms. Regular readers may remember the guest post my mother (a psychologist specializing in grief and loss, death and dying) wrote about the difference between guilt and regret (full post here). I have certainly come to accept those distinctions and to use them accordingly:

People use the word “guilt” more often than is appropriate. Improperly using the word “guilt” can result in unnecessary emotional distress and harsh self-criticism. The word “guilt” refers to something you did, something which you feel you shouldn’t have done because it was morally or legally wrong. But what if the experience you feel guilty about was not something you caused or had control over? Then you would feel regret, not guilt.

Througout the book Strauss uses the terms interchangeably. He ends up with a painful stomach disorder requiring surgery. He later suffers from IBS and then CPPS (chronic pelvic pain syndrome) summarizing, “That’s the force of guilt for you.” I’d argue that it’s regret he feels; the accident wasn’t his fault. I wonder if Strauss would describe the book as I do, one which documents the evolution from guilt to regret; a journey toward making peace with the fact that things couldn’t have been different on that day.

I couldn’t help but wonder if counseling could have helped him see his actions in the proper light and helped to relieve some of this literal gut-eating self-criticism he’d been experiencing for years. At various points, Strauss believes Celine may have committed suicide, there are clues that this may have been the case. In the end, the only emotion Strauss is justified in feeling is regret; he writes, “Regret doesn’t budge things; it seems crazy that the force of all that human want can’t amend a moment, can’t even stir a pebble.”

Given my upbringing, I couldn’t help but be bothered by the lack of good psychological support for Strauss after the accident– could an insightful therapist trained in grief counseling have helped him negotiate some these feelings? Strauss says in a footnote, “I’d started going to therapy… though not (I really don’t think) as a response to the accident. I’d gone with pretty boilerplate stuff: your typical mid-thirties complaints… my therapy attempts had always been near-misses, fizz-outs if not outright failures.” A psychologist specializing in grief would have certainly been able to show that while Strauss may not have himself seen that he was seeking therapy as a response to the accident, it certainly could not be removed from his problems. While the problems in his thirties may have been boilerplate, the accident which haunted him for twenty years until that point was not.

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Writing about grief, regret, shame, and inner turmoil can be difficult. By their very nature our most personal and private thoughts can be difficult to express. However, they can also be the most rewarding to document, for these are challenges most people face at some point in their lives. The road maps we have for navigating life’s challenges are some combination of our own instincts, observations of others, and advice along the way.

I would think Strauss has heard hundreds, if not thousands, of stories since he finally began sharing his own. Tragedy invites sharing, camaraderie. I have found a similar experience with cancer; there is a natural tendency for others to connect and say “I have been there too.”

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Strauss is now a father. I wonder how Celine’s death will impact his next twenty years. Will he be more safety-conscious? What will it be like the first time his sons drive a car? Ride a bike on a busy street? How will he navigate parenthood differently because of this experience? And what are the triggers now for making him think of Celine? There must certainly be a pattern to those. Perhaps because therapy was ineffective in his youth, I was left wondering if parenthood will cause some of these unresolved emotional landmines to crop up yet again.

While time has a way of allowing us to move into a different stage of grief where we can go through minutes, hours, and days without being consumed with emotion, the feelings are always there, just below the surface, ready to rise at a moment’s notice. We can’t possibly always know what might trigger the flood, but it will come.

I started this post saying the Zilkes are lucky; they have a window into the mind of the person who accidentally killed their child. My own unanswered questions about Barbara’s death certainly affected my reading of this book. If I can’t have my own answers, I wanted to read Strauss’s. The truth is that we have to find our own answers, our own ways of weaving experiences into the tapestry of our lives so that we are resilient for what is yet to come.

I really enjoyed reading this book and grappling with some of these difficult questions as I read. The themes of death, regret, perseverance, responsibility, and decision-making are endlesslessly fascinating to me.

One of the things that still astounds me about grief is how it only takes a moment to be jerked back into its grasp, even years after a loved one has died. It still happens to me with Barbara. I’m going along, minding my own business, and I see something, hear something, touch something and it reminds me of her. And it hurts just as much as it did two years ago when my mother-in-law died in a car crash.

Two weeks ago I walked through the Christmas decoration display in a tent at a local store. I was looking for outdoor lights and was feeling like a child mesmerized by all of the lighted figurines and trees. They had music playing and it wasn’t until I stepped further in that I really heard what it was: it was a boys’ choir singing Ave Maria. That’s all it took as I silently cried while listening to those pure voices sing one of Barbara’s favorite songs.

Our senses betray us, provide the conduit to those places in our memory we think are closed and safe. I’m not sure I’ll ever be safe. I think we stay vulnerable, sensitive, fragile. That’s what happens when you really love someone.

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October 6, 2009

The moments catch me off-guard,
like my brother used to do
when we were kids.

He’d lay in wait
around the corner
in the hallway upstairs,
behind the jog in the corridor
outside my bedroom.

He would leap out,
scaring me,
terrifying me,
and I would scream
and shake
and cry.

That’s what these moments do:
they make me
scream
and shake
and cry.

Last night it was Paige,
with her round angelic face,
eyes pink with tears bursting,
coming into the kitchen while I was on the phone with my parents.

“I went to the computer…
to send some email to some friends…
and all of the emails from her are there…
there’s just a whole list of emails from her there…
it just says ‘Barbara Adams’ the whole way down…
and I just keep thinking how she’s never going to write me back…”

And so we cried.
Together.
And we talked.
Together.

Tonight
I was cleaning the kitchen,
packing up backpacks,
doing things I thought were “safe.”
I thought I would be protected from
emotional assault.

I opened Colin’s green homework folder and
put in his math assignment.
A sheet was already inside the folder,
a red squiggly crayon line decorating one edge.

I pulled out the paper with reckless abandon,
expecting an innocent scribble,
a wasted silly drawing.

But instead, it was a piece of writing paper.
On it, neatly printed in his finest handwriting,
it said, “Bye-Bye Grandma”
and there was a tombstone shape in the middle
that said “Barbara Adams 2009.”

There were green zig zags on the top and bottom,
red squiggles on the left and right,
bright colors all around.

I wasn’t ready for it.
I didn’t know it was there,
in the shadows,
waiting,
lurking,
coiled to take advantage when I dropped my guard,
waiting for me to be vulnerable.

And so I acted just like I did when I was a
child and my brother scared me.
I screamed.
I shook.
And I cried.

I vowed not to let my guard down like that
Again.

I love you, Paige.
I love you, Colin.
I love that you loved your Grandma so much.
I loved her too.
I miss her too.

And my hurt may dull a bit,
but it’s never going to go away,
because some of my hurt is for you.

It hurts not only that I don’t have Grandma in my life,
but also that you don’t.
And that’s what makes me cry the most,
because I know how much she loved you both,
and little Tristan too.

One day
we’ll have to explain to him just how special she was
and how much she loved him
and all of the the special things she did to show it.

Thinking about the fact that she’s not going to be here to
show him for herself just breaks my heart…

My mother retired a few years ago. For much of her adult life she was a psychologist specializing in grief and loss, death and dying. She wrote her dissertation on the impact a child’s death has on family dynamics. She used a case study method, doing in-depth interviews with surviving family members of various tragic events that happened. In one case, a house fire killed a child; in another, a baby died of SIDS.

They were heart-wrenching stories, and even as a child I could tell this was “heavy stuff.” Of course I couldn’t comprehend the magnitude of a parent’s love for his/her child until I had my own; but, I realized in reading the transcripts that grief is a multi-faceted emotion. And that loss is a process.

Having my mother work in this somewhat unusual profession was excellent training. I learned at an early age so much about sympathy, empathy, guilt, regret, and the discomfort our society feels about the subject of death. Despite the fact that it is the one thing that unites us all, the one common thread in all our lives, most people just don’t want to explore the subject of death. It makes people uncomfortable, makes them squirm, and almost universally makes people change the subject.

When you have had a death in the family, people don’t know what to say. In fact, it is likely many people won’t bring it up. Often, they worry that they will be reminding you of the tragedy, as if you have forgotten it. Anyone who has experienced a death of a loved one knows this isn’t true. The deceased person is never far from your mind, from your heart. And more often than not, you want to talk about that person. My mother taught me this. She taught me that people will never be upset if you remember and talk about the person they loved; it means their legacy lives on. Everyone wants to be remembered. You honor this desire when you talk about a deceased person.

I have said many times that growing up with my two parents was the best training for my string of illnesses through the years. While cancer has been the most serious, it has by no means been the only medical challenge I’ve had. But having a surgeon for a father and a psychologist for a mother was perfect.

I was able to digest complex medical information. When surgeons told me what needed to be done I could weigh my options methodically. I could weigh options of treatment and ask good questions to determine the best course of action for me. I could read pathology reports with ease. And then I could be insightful into my emotional response, being introspective and analytic

And being insightful and analytic about a life-threatening disease means confronting mortality. Often I hear stories of people dying without a will. In fact, often it’s only once people have children that they feel sufficiently motivated to create a will, because their love for their child (and making plans for a guardian) is the only thing that can make them confront this fear.

Often when I was in the midst of chemotherapy I wanted to have conversations about the “what ifs.”

What if they didn’t get it all.

What if the chemo doesn’t work.

What if the cancer comes back.

What if I get another (worse) kind of cancer from the chemo.

What if I die.

No one really wanted to talk about the last possibility even though it wasn’t outlandish. (Interestingly, people are very intrigued with my recurrence likelihood and mortality statistics… they view the numbers as easier to talk about in the aggregate rather than just discussing my own death).

I viewed talking about my death as responsible. I wanted to make sure Clarke understood that if I died, I wanted him to find another wife. I wanted him to be happy and loved. I wanted our children to have a mother to love them. Unsurprisingly, my greatest worries centered on my children.

I sat with a friend at coffee one day and voiced some of these concerns. With 5 children of her own, my friend is an amazing wife and mother in all respects. At first she was resistant to talk about my death with me. She didn’t want to entertain that notion. But I pressed the issue. And finally she looked me in the eye and said, “If you die, I promise I will watch over your children. I promise I will make sure they have the right person love them and raise them. I promise you that I will make sure that happens.” I think she figured it was the fastest way to shut me up. I think she figured she would agree to anything I was asking just so we could get off the subject. But at some point I think she realized that it was really important to me. I wasn’t going to let it go. And I wasn’t going to be able to get past it until I felt they would be safe and watched over. So she told me what I needed to hear. And I know she meant what she said.

Like a balloon slowly deflating, I felt my body go lax. Finally, I could let it go. She had promised me she would do for me what I wanted. I could trust her, and I could move my worry to something else. She did more for me by making this promise than she will ever know.

Here is one of the things I’ve learned from my mother: When someone you love is talking about death, don’t change the subject. Don’t trivialize their worries. Don’t say, “Let’s not talk about that now.” If they want to talk about it, it means it’s important to them, it’s weighing on them.

Focus on the fact that while we don’t need to sit around thinking about death all the time, there unfortunately might be times in our lives when we might not be able to think of anything else. If you haven’t experienced that, I applaud you. But sooner or later, you or someone you love will.

I’m working on a new piece about grief during the holiday season, but really want to re-share this short post for those who missed it. I actually re-read it from time to time to remind myself of a valuable insight I had with two of our three children. This was originally written two days after their grandmother was killed in a car crash in 2009.

……………………………………………………..

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

This is still one of the most important posts I’ve made. One of the ways you can be a good friend to someone going through a difficult time is to use open-ended questions. In this way, you are not projecting your own feelings onto them; neither are you assuming what feelings they are having. Trust me: they’ll appreciate it.

…………………………………..

There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.

It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.

One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.

As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.

A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.

What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”

The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.

But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.

Maybe the battle is not really with cancer. Maybe it’s with myself.

But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.

You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.

Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.

Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”

An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.

Regular readers of this blog know that after more than 49 years of marriage my parents have decided to separate. Over the past few months I’ve memorized a new phone number for my mother. I wrote her new address on a piece of lime green note paper and pinned it to my bulletin board. I’ve repeated stories about my children in the past few weeks twice– first to one of my parents, then to the other.

But six days ago I had the unique and unpleasant experience of driving up the driveway to the house they still own knowing my mother would not be standing out in the driveway waiting for me to arrive.

I was greeted by my father, instead, alone ushering me into my mother’s garage bay, the one she still uses when she has occasion to be at the house.

I walked inside and looked around; her desk in the kitchen was mostly bare, so too some of the walls in each of the rooms. The refrigerator held less than half of what it usually would; even my beloved Nespresso machine was no longer a fixture. I didn’t even go in many of the rooms. I didn’t want to see all of the changes.

Things were different, and not only the things.

Seeing my mother needed to be planned, coordinated. No longer was she only as far as a loud yell down the hall. No more could I stalk her around the house instigating conversation in an attempt to catch up on every little thing we’d missed since our last phone call.

That night I saw her new apartment and everything really started to sink in. By the next morning when I awakened I was overcome with emotion. I went downstairs to the kitchen and still half-expected her to be there, reading the paper, re-heating a cup of coffee that might have been put aside and gotten a chill. I still expected to see her the way I almost always did in the morning: dressed for the day, a full face of makeup save the trademark cherry red lipstick she would wait to apply until she had finished her morning cup of coffee.

For now phone calls via speed dial and texts would have to tie us together.

It wasn’t the same, of course. It couldn’t be. It can’t ever be.

I did keep a constant refrain in my head: my mother is alive, my mother is healthy. I am thankful for that.

She was not under the same roof I was anymore, but she still resides where she always has: in my heart, as close as she can be.